Kristin Bjordal

• Hofsø, Kristin; Rustøen, Tone; Bjordal, Kristin; Hagen, Milada; Aouizerat, B. & Astrup, Guro Lindviksmoen (2026). Association between symptom experience and long-term survival in people treated for cancer. ESMO Open. 11(10), p. 1–7. doi: 10.1016/j.esmoop.2026.108579. Full text in Research Archive
• Piccinin, Claire; Aaronson, Neil K.; Bjordal, Kristin; Coens, Corneel; Darlington, Anne Sophie & Efficace, Fabio [Show all 23 contributors for this article] (2025). Flexibility in patient-reported outcome and health-related quality of life measurement: The EORTC Quality of Life Group measurement strategy. European Journal of Cancer. ISSN 0959-8049. 220. doi: 10.1016/j.ejca.2025.115392. Full text in Research Archive
• Amdal, Bente Cecilie Delphin; Falk, Ragnhild Sørum; Alanya, Ahu; Schlichting, Michael; Roychoudhury, Satrajit & Bhatnagar, Vishal [Show all 100 contributors for this article] (2025). SISAQOL-IMI consensus-based guidelines to design, analyse, interpret, and present patient-reported outcomes in cancer clinical trials. The Lancet Oncology. ISSN 1470-2045. 26(12), p. e683–e693. doi: 10.1016/S1470-2045(25)00520-0. Full text in Research Archive
• Jansen, Femke; Eerenstein, Simone EJ.; Taylor, Katherine J.; Amdal, Cecilie Delphin; Bjordal, Kristin & Astrup, Guro Lindviksmoen [Show all 36 contributors for this article] (2025). Unmet supportive care needs among head and neck cancer survivors beyond 5 years after diagnosis: a multinational cohort study. The Lancet Regional Health - Europe. 59. doi: 10.1016/j.lanepe.2025.101495. Full text in Research Archive Show summary

  Background This study investigates unmet supportive care needs (SCNs) among head and neck cancer (HNC) survivors beyond 5 years after diagnosis and examines the association with sociodemographic, clinical and lifestyle factors, and differences in European and non-European regions and healthcare systems. Methods In this cross-sectional study, 1097 HNC survivors from 11 countries completed the Short-Form Supportive Care Needs Survey (SCNS-SF34) and HNC-specific module (SCNS-HNC), encompassing physical and daily living, psychological, sexuality, HNC-specific and lifestyle domains. Scores were dichotomized per domain and across domains into moderate-high unmet SCNs (yes/no). Logistic regression analyses were used to investigate associated factors. Findings Half (50%, proportion 100/200) of HNC survivors had unmet SCNs (overall), especially unmet HNC-specific (40%, 40/100), psychological (25%, 25/100), and physical and daily living (22%, 22/100) needs. Personal (women, lower age), lifestyle (smoking, alcohol consumption) and clinical factors (advanced tumor stage, second primary tumor, multimodality treatment [versus single surgery], poor Karnofsky performance score and comorbidities) were associated with unmet SCNs. Physical and daily living, HNC-specific and overall unmet SCNs were more likely among survivors from Northern Europe compared to Southern and Western Europe. Unmet psychological, sexuality and lifestyle needs were more likely among non-European countries. All unmet SCNs (except psychological) were more likely among survivors with a national health system compared to a social and/or etatist health insurance system. Interpretation Half of HNC survivors have unmet SCNs. Insight into healthcare utilization may provide insights how to improve care.

• Westgaard, Kristine Løken; Amdal, Cecilie Delphin; Taylor, Katherine J.; Falk, Ragnhild Sørum; Bjordal, Kristin & Singer, Susanne [Show all 15 contributors for this article] (2025). Oral health-related quality of life among long-term head and neck cancer survivors: a multinational study. Supportive Care in Cancer. ISSN 0941-4355. 33(10). doi: 10.1007/s00520-025-09930-8. Full text in Research Archive Show summary

  Purpose Our aim was to investigate oral health-related quality of life (OHRQoL) and toxicities in long-term head and neck cancer (HNC) survivors diagnosed ≥five years earlier. Methods HNC survivors treated between 2007 and 2013 participated in an international cross-sectional study. They completed the European Organization for Research and Treatment of Cancer (EORTC) core quality of life questionnaire (EORTC QLQ-C30) and the oral health module (EORTC QLQ-OH15) and attended a hospital examination. Clinicians scored toxicities using the Common Terminology Criteria for Adverse Events version 5.0. OHRQoL was analyzed based on four types of treatment: surgery, radiotherapy, chemoradiotherapy without surgery and surgery with postoperative (chemo) radiotherapy. Survivors were divided into three groups according to the EORTC QLQ-OH15 oral health-QoL scale score; the lowest (defined as poor OHRQoL), middle and highest tertile. Results Eleven sites in six countries enrolled 404 HNC survivors. The median time since diagnosis was 8.4 years, the mean age was 66 years and 67% were male. A total of 116 (29%) of the survivors reported poor OHRQoL. They were more often females and survivors with advanced disease. The survivors with poor OHRQoL also had more toxicity: dysphagia, trismus, osteonecrosis of the jaw, oral pain and dry mouth. There were no clinically significant differences in OHRQoL between the four treatment groups. Conclusion Our study showed that the survivors who reported poor OHRQoL also had a high level of late toxicity. This highlight the need for improved follow-up of the oral health of HNC survivors many years after initial treatment, especially for women and those who were treated for advanced disease.

• Singer, Susanne; Amdal, Cecilie Delphin; Bjordal, Kristin; Herlofson, Bente Brokstad; Astrup, Guro Lindviksmoen & Boehm, Andreas [Show all 27 contributors for this article] (2025). Late Toxicity and Long‐Term Quality of Life in Survivors of Cancer of the Major Salivary Glands More Than 5 Years After Diagnosis: A Multi‐National Study. Head and Neck. ISSN 1043-3074. doi: 10.1002/hed.28263. Full text in Research Archive Show summary

  Background Because salivary gland cancers (SGC) are rare and include different tumor subtypes, data on their long‐term quality of life and late toxicities are sparse. Methods Multi‐national study including SGC survivors more than 5 years after diagnosis. They completed the European Organisation for Research and Treatment of Cancer (EORTC) quality of life core questionnaire together with its head and neck cancer module and reported problems that were most bothering for them. Toxicity was clinically assessed. Results Altogether, 60 survivors from nine countries participated and reported dry mouth (mean score 37.2), use of painkillers (35.0), problems with sexuality (30.1), insomnia (28.9), fatigue (27.8), trismus (24.9), and sticky saliva (23.3). The most frequently mentioned long‐term problem was dry mouth , mentioned by a third of all participants. The most frequent toxicities were hearing impairment , soft tissue fibrosis , dry mouth , and cranial neuropathies . Conclusions Dry mouth is a frequent and disturbing problem in SGC survivors.

• Taylor, Katherine J.; Amdal, Cecilie Delphin; Bjordal, Kristin; Astrup, Guro Lindviksmoen; Herlofson, Bente Brokstad & Duprez, Fréderic [Show all 37 contributors for this article] (2025). Toxicities in long-term survivors of head and neck cancer - A multi-national cross-sectional analysis. International Journal of Cancer. ISSN 0020-7136. 157(10), p. 2061–2070. doi: 10.1002/ijc.70033. Full text in Research Archive Show summary

  Head and neck cancer (HNC) patients may experience toxicities as a result of their treatment modality. While acute toxicities have been well documented, the prevalence of toxicities at long-term follow-up of HNC survivors is less clear. As part of a multi-national, cross-sectional study, HNC survivors at least 5 years post-diagnosis were invited to undergo a toxicity examination. Using the Common Terminology Criteria for Adverse Events (version 5), 33 toxicities were assessed. From 2019 to 2021, 1094 survivors from 26 sites in 11 countries completed the assessment. Eighty-seven percent were from Europe, and most were survivors of oropharynx (35%), oral cavity (21%), or larynx cancer (19%). The majority had been diagnosed at stage III or IV (62%), and the median time since diagnosis was 8 years (range 5–36). Most had been treated with surgery and radiotherapy with or without chemotherapy (38%). Six percent had no toxicities, and 26% had only mild toxicities. 68% had at least one moderate or severe late toxicity. Overall, the most frequent late toxicities at any grade were dry mouth (67%), soft tissue fibrosis (52%), dysphagia (51%), and voice alterations (39%). Fistulae, neck and face edema, and osteonecrosis of the jaws were present in very few survivors. Our study shows that the majority of HNC survivors experience moderate or severe late toxicities, but that the problems are concentrated in a small group of specific toxicities. Understanding the problems experienced in the long term can help better inform newly diagnosed patients as well as inform survivorship follow-up initiatives.

• Singer, Susanne; Hammerlid, Eva; Tomaszewska, Iwona M.; Amdal, Cecilie Delphin; Herlofson, Bente Brokstad & Santos, Marcos [Show all 31 contributors for this article] (2024). The european organisation for research and treatment of cancer head and neck cancer module (EORTC QLQ-HN43): Estimates for minimal important difference and minimal important change. European Journal of Cancer. ISSN 0959-8049. 212. doi: 10.1016/j.ejca.2024.115062. Full text in Research Archive Show summary

  Introduction Minimal important change estimates (MIC) are useful for interpreting results of clinical research with quality of life (QoL) as an endpoint. For the European Organisation for Research and Treatment of Cancer head and neck cancer module, the EORTC QLQ-HN43, no such thresholds are established. Methods Head and neck cancer patients under active treatment (n = 503) from 15 countries completed the EORTC QLQ-HN43 three times (t1: before treatment, t2: three months after t1, t3: six months after t1). A subgroup completed a Subjective Significance Questionnaire (SSQ), indicating experienced change from the previous time point in four QoL domains. QoL was assumed to deteriorate after t1 and improve again until t3. The MIC was established using the average of mean differences in SSQ groups (MICmean) and estimates based on logistic regressions (MICpredict). Additionally, minimal detectable changes (MDC) were computed using 0.5 standard deviation and standard error of the mean. Results For swallowing, speech, dry mouth, and global QoL, the MIC for deterioration were 13, 14, 26, and 10 respectively. The MIC for improvement were 8 (swallowing), 6 (dry mouth), and 5 (global QoL); no MIC for speech improvement can be presented because of insufficient correlation between change score and anchor. The MDC estimates for deterioration were 15, 14, 15, and 11. For improvement, the MDC estimates were 13, 14, 14, and 11. Conclusions Our results underline that no single MIC or MDC can be applied to all EORTC QLQ-HN43 scales, and that the MIC for deterioration seems larger than those for improvement.

• Huynh, Thuy-Tien Maria; Falk, Ragnhild Sørum; Hellebust, Taran Annette Paulsen; Dale, Einar; Astrup, Guro Lindviksmoen & Hjermstad, Marianne Jensen [Show all 12 contributors for this article] (2024). Chronic fatigue in long-term survivors of head and neck cancer treated with radiotherapy. Radiotherapy and Oncology. ISSN 0167-8140. 195. doi: 10.1016/j.radonc.2024.110231. Full text in Research Archive Show summary

  Background There is lack of evidence on chronic fatigue (CF) following radiotherapy (RT) in survivors of head and neck cancer (HNC). We aimed to compare CF in HNC survivors > 5 years post-RT with a reference population and investigate factors associated with CF and the possible impact of CF on health-related quality of life (HRQoL). Material and methods In this cross-sectional study we included HNC survivors treated in 2007–2013. Participants filled in patient-reported outcome measures and attended a one-day examination. CF was measured with the Fatigue Questionnaire and compared with a matched reference population using t-tests and Cohen’s effect size. Associations between CF, clinical and RT-related factors were investigated using logistic regression. HRQoL was measured with the EORTC Quality of Life core questionnaire. Results The median age of the 227 HNC survivors was 65 years and median time to follow-up was 8.5 years post-RT. CF was twice more prevalent in HNC survivors compared to a reference population. In multivariable analyses, female sex (OR 3.39, 95 % CI 1.82–6.31), comorbidity (OR 2.17, 95 % CI 1.20–3.94) and treatment with intensity-modulated RT (OR 2.13, 95 % CI 1.16–3.91) were associated with CF, while RT dose parameters were not. Survivors with CF compared to those without, had significantly worse HRQoL. Conclusions CF in HNC survivors is particularly important for female patients, while specific factors associated with RT appear not to play a role. The high CF prevalence in long-term HNC survivors associated with impaired HRQoL is important information beneficial for clinicians and patients to improve patient follow-up.

• Taylor, Katherine J.; Amdal, Cecilie Delphin; Bjordal, Kristin; Astrup, Guro Lindviksmoen; Herlofson, Bente Brokstad & Duprez, Fréderic [Show all 36 contributors for this article] (2024). Long-term health-related quality of life in head and neck cancer survivors: A large multinational study. International Journal of Cancer. ISSN 0020-7136. doi: 10.1002/ijc.34861. Full text in Research Archive Show summary

  Head and neck cancer (HNC) patients suffer from a range of health-related quality of life (HRQoL) issues, but little is known about their long-term HRQoL. This study explored associations between treatment group and HRQoL at least 5 years' post-diagnosis in HNC survivors. In an international cross-sectional study, HNC survivors completed the European Organization for Research and Treatment of Cancer (EORTC) quality of life core questionnaire (EORTC-QLQ-C30) and its HNC module (EORTC-QLQ-H&N35). Meaningful HRQoL differences were examined between five treatment groups: (a) surgery, (b) radiotherapy, (c) chemo-radiotherapy, (d) radiotherapy ± chemotherapy and neck dissection and (e) any other surgery (meaning any tumour surgery that is not a neck dissection) and radiotherapy ± chemotherapy. Twenty-six sites in 11 countries enrolled 1105 survivors. They had a median time since diagnosis of 8 years, a mean age of 66 years and 71% were male. After adjusting for age, sex, tumour site and UICC stage, there was evidence for meaningful differences (10 points or more) in HRQoL between treatment groups in seven domains (Fatigue, Mouth Pain, Swallowing, Senses, Opening Mouth, Dry Mouth and Sticky Saliva). Survivors who had single-modality treatment had better or equal HRQoL in every domain compared to survivors with multimodal treatment, with the largest differences for Dry Mouth and Sticky Saliva. For Global Quality of Life, Physical and Social Functioning, Constipation, Dyspnoea and Financial Difficulties, at least some treatment groups had better outcomes compared to a general population. Our data suggest that multimodal treatment is associated with worse HRQoL in the long-term compared to single modality.

• Amdal, Cecilie Delphin; Moan, Jon Magne Kaarstein; Dale, Einar; Falk, Ragnhild Sørum; Johansen, Safora & Bjordal, Kristin (2023). Impact of hyperfractionated re-irradiation on quality of life in patients with recurrent or second primary head and neck cancer, a prospective single institutional study. Clinical and Translational Radiation Oncology. 42. doi: 10.1016/j.ctro.2023.100654. Full text in Research Archive Show summary

  Purpose Describe the clinical outcome of hyperfractionated re-irradiation (HFRT) in patients with recurrent or second primary (SP) head and neck cancer (HNC). Methods This prospective observational study included HNC patients eligible for HFRT. Inclusion criteria: age ≥18 years, recurrent or SP HNC, planned re-irradiation and ability to respond to questionnaires. Patients received 1.5 Gy twice daily, five days a week for three (palliative) or four (curative/local control) weeks, total dose 45/60 Gy. Toxicity was scored with CTCAE v3 at baseline, end of treatment, at three, six, 12 and 36 months follow-up. Health-related quality of life (HRQoL) was measured with EORTC QLQ-C30 and EORTC QLQ-H&N35, pre-treatment and eight times until 36 months. In the main outcome (Global quality of life and H&N Pain), a change score of ≥10 was considered clinically significant, and p-values < 0.05 (two-sided) statistically significant. The Kaplan-Meier method was used for survival analyses. Results Over four years from 2015, 58 patients were enrolled (37 recurrent and 21 SP). All, but two patients completed treatment as planned. Toxicity (≥grade 3) increased from pre-treatment to end of treatment with improvement in the follow-up period. The mean Global quality of life (QoL) and H&N Pain scores were stable from pre-treatment to three months. Maintained/ improved Global QoL was reported by 60% of patients at three months and 56% of patients at 12 months. For patients with curative, local control and palliative intent, the median survival (range) was 23 (2–53), 10 (1–66) and 14 (3–41) months respectively. Of those alive, the proportion of disease-free patients at 12 and 36 months, were 58% and 48%, respectively. Conclusion Most HNC patients reported maintained HRQoL at three and 12 months after HFRT despite serious toxicity observed in many patients. Long-term survival can be achieved in a limited proportion of the patients.

• Huynh, Thuy-Tien Maria; Dale, Einar; Falk, Ragnhild Sørum; Hellebust, Taran Annette Paulsen; Astrup, Guro Lindviksmoen & Malinen, Eirik [Show all 12 contributors for this article] (2023). Radiation-induced long-term dysphagia in survivors of head and neck cancer and association with dose-volume parameters. Radiotherapy and Oncology. ISSN 0167-8140. 190. doi: 10.1016/j.radonc.2023.110044. Full text in Research Archive Show summary

  Background Although dysphagia is a common side effect after radiotherapy (RT) of head and neck cancer (HNC), data on long-term dysphagia is scarce. We aimed to 1) compare radiation dose parameters in HNC survivors with and without dysphagia, 2) investigate factors associated with long-term dysphagia and its possible impact on health-related quality of life (HRQoL), and 3) investigate how our data agree with existing NTCP models. Methods This cross-sectional study conducted in 2018–2020, included HNC survivors treated in 2007–2013. Participants attended a one-day examination in hospital and filled in patient questionnaires. Dysphagia was measured with the EORTC QLQ-H&N35 swallowing scale. Toxicity was scored with CTCAE v.4. We contoured swallowing organs at risk (SWOAR) on RT plans, calculated dose-volume histograms (DVHs), performed logistic regression analyses and tested our data in established NTCP models. Results Of the 239 participants, 75 (31%) reported dysphagia. Compared to survivors without dysphagia, this group had reduced HRQoL and the DVHs for infrahyoid SWOAR were significantly shifted to the right. Long-term dysphagia was associated with age (OR 1.07, 95% CI 1.03–1.10), female sex (OR 2.75, 95% CI 1.45–5.21), and mean dose to middle pharyngeal constrictor muscle (MD-MPCM) (OR 1.06, 95% CI 1.03–1.09). NTCP models overall underestimated the risk of long-term dysphagia. Conclusions Long-term dysphagia was associated with higher age, being female, and high MD-MPCM. Doses to distally located SWOAR seemed to be risk factors. Existing NTCP models do not sufficiently predict long-term dysphagia. Further efforts are needed to reduce the prevalence and consequences of this late effect.

• Pe, Madeline; Alanya, Ahu; Falk, Ragnhild Sørum; Amdal, Cecilie Delphin; Bjordal, Kristin & Chang, Jane [Show all 27 contributors for this article] (2023). Setting International Standards in Analyzing Patient-Reported Outcomes and Quality of Life Endpoints in Cancer Clinical Trials-Innovative Medicines Initiative (SISAQOL-IMI): stakeholder views, objectives, and procedures. The Lancet Oncology. ISSN 1470-2045. 24(6), p. e270–e283. doi: 10.1016/S1470-2045(23)00157-2. Full text in Research Archive
• Taylor, Katherine J.; Amdal, Cecilie Delphin; Bjordal, Kristin; Astrup, Guro Lindviksmoen; Herlofson, Bente Brokstad & Duprez, Fréderic [Show all 34 contributors for this article] (2023). Serious Long-Term Effects of Head and Neck Cancer from the Survivors’ Point of View. Healthcare. 11(6). doi: 10.3390/healthcare11060906. Full text in Research Archive Show summary

  The long-term problems of head and neck cancer survivors (HNCS) are not well known. In a cross-sectional international study aimed at exploring the long-term quality of life in this population, 1114 HNCS were asked to state their two most serious long-term effects. A clinician recorded the responses during face-to-face appointments. A list of 15 example problems was provided, but a free text field was also available. A total of 1033 survivors responded to the question. The most frequent problems were ‘dry mouth’ (DM) (n = 476; 46%), ‘difficulty swallowing/eating’ (DSE) (n = 408; 40%), ‘hoarseness/difficulty speaking’ (HDS) (n = 169; 16%), and ‘pain in the head and neck’ (PHN) (n = 142; 14%). A total of 5% reported no problems. Logistic regression adjusted for age, gender, treatment, and tumor stage and site showed increased odds of reporting DM and DSE for chemo-radiotherapy (CRT) alone compared to surgery alone (odds ratio (OR): 4.7, 95% confidence interval (CI): 2.5–9.0; OR: 2.1, CI: 1.1–3.9), but decreased odds for HDS and PHN (OR: 0.3, CI: 0.1–0.6; OR: 0.2, CI: 0.1–0.5). Survivors with UICC stage IV at diagnosis compared to stage I had increased odds of reporting HDS (OR: 1.9, CI: 1.2–3.0). Laryngeal cancer survivors had reduced odds compared to oropharynx cancer survivors of reporting DM (OR: 0.4, CI: 0.3–0.6) but increased odds of HDS (OR: 7.2, CI: 4.3–12.3). This study provides evidence of the serious long-term problems among HNCS.

• Singer, Susanne; Hammerlid, Eva; Tomaszewska, Iwona M; Amdal, Cecilie Delphin; Bjordal, Kristin & Santos, Marcos [Show all 30 contributors for this article] (2022). Methodological approach for determining the Minimal Important Difference and Minimal Improtenat Change scores for the European Organisation for Research and Treatment of Cancer Head and Neck Cancer Module (EORTC QLQ-HN43) exemplified by the swallowing scale. Quality of Life Research. ISSN 0962-9343. doi: 10.1007/s11136-021-02939-6. Full text in Research Archive Show summary

  Purpose The aim of this study was to explore what methods should be used to determine the minimal important difference (MID) and minimal important change (MIC) in scores for the European Organisation for Research and Treatment of Cancer Head and Neck Cancer Module, the EORTC QLQ-HN43. Methods In an international multi-centre study, patients with head and neck cancer completed the EORTC QLQ-HN43 before the onset of treatment (t1), three months after baseline (t2), and six months after baseline (t3). The methods explored for determining the MID were: (1) group comparisons based on performance status; (2) 0.5 and 0.3 standard deviation and standard error of the mean. The methods examined for the MIC were patients' subjective change ratings and receiver-operating characteristics (ROC) curves, predictive modelling, standard deviation, and standard error of the mean. The EORTC QLQ-HN43 Swallowing scale was used to investigate these methods. Results From 28 hospitals in 18 countries, 503 patients participated. Correlations with the performance status were |r|< 0.4 in 17 out of 19 scales; hence, performance status was regarded as an unsuitable anchor. The ROC approach yielded an implausible MIC and was also discarded. The remaining approaches worked well and delivered MID values ranging from 10 to 14; the MIC for deterioration ranged from 8 to 16 and the MIC for improvement from − 3 to − 14. Conclusions For determining MIDs of the remaining scales of the EORTC QLQ-HN43, we will omit comparisons of groups based on the Karnofsky Performance Score. Other external anchors are needed instead. Distribution-based methods worked well and will be applied as a starting strategy for analyses. For the calculation of MICs, subjective change ratings, predictive modelling, and standard-deviation based approaches are suitable methods whereas ROC analyses seem to be inappropriate.

• Huynh, Thuy-Tien Maria; Aass, Hans Christian Dalsbotten; Falk, Ragnhild Sørum; Astrup, Guro Lindviksmoen; Helland, Åslaug & Bjøro, Trine [Show all 14 contributors for this article] (2022). Associations between patient-reported late effects and systemic cytokines in long-term survivors of head and neck cancer treated with radiotherapy. Journal of cancer survivorship. ISSN 1932-2259. doi: 10.1007/s11764-022-01273-1. Full text in Research Archive Show summary

  Purpose Head and neck cancer (HNC) treatment may lead to late effects and impaired health-related quality of life of survivors. Knowledge on long-term late effects after radiotherapy (RT) and potential underlying biological mechanisms is lacking. We assessed the prevalence of xerostomia, dysphagia, and chronic fatigue (CF) in HNC survivors ≥ 5 years post-RT, and examined associations between pro-inflammatory cytokines and late effects. Methods In a cross-sectional study, 263 HNC survivors treated between 2007 and 2013 were enrolled. They completed validated questionnaires assessing xerostomia and dysphagia (the EORTC QLQ-H&N35), and CF (the Fatigue Questionnaire), and underwent blood sampling and clinical examination. Pro-inflammatory cytokines were analyzed in 262 survivors and 100 healthy age- and gender-matched controls. Results Median time since treatment was 8.5 years. The proportions of survivors reporting xerostomia, dysphagia, and CF were 58%, 31%, and 33%, respectively, with a preponderance of females. We found no significant associations between IL-6, IL-8, IP-10, TARC, TNF, or ENA-78 and the three late effects. The odds of having elevated levels of IL-6 and IP-10 were significantly higher in the survivors compared to the controls. Conclusions More than one-third of long-term HNC survivors experienced xerostomia, dysphagia, and CF. Persistent inflammation, with elevated systemic cytokines, was not associated with these late effects, although HNC survivors had higher levels of some cytokines than the controls. Implications for Cancer Survivors This study provides new knowledge on late effects that can serve as grounds for informing patients with HNC about risk of late effects more than 5 years after RT.

• Amdal, Cecilie Delphin; Taylor, Katherine; Kuliś, Dagmara; Falk, Ragnhild Sørum; Bottomley, Andrew & Arraras, Juan Ignacio [Show all 18 contributors for this article] (2022). Health-related quality of life in patients with COVID-19; international development of a patient-reported outcome measure. Journal of Patient-Reported Outcomes. 6:26(1), p. 1–13. doi: 10.1186/s41687-022-00434-1. Full text in Research Archive Show summary

  Background: We aimed to create a questionnaire to assess the health-related quality of life including functioning, symptoms, and general health status of adult patients with current or previous COVID-19. Here, we report on Phase I and II of the development. Methods: Internationally recognized methodology for questionnaire development was followed. In Phase I, a comprehensive literature review was performed to identify relevant COVID-19 issues. Decisions for inclusion, exclusion, and data extraction were completed independently in teams of two and then compared. The resulting issues were discussed with health care professionals (HCPs) and current and former COVID-19 patients. The input of HCPs and patients was carefully considered, and the list of issues updated. In Phase II, this updated list was operationalized into items/questions. Results: The literature review yielded 3342 publications, 339 of which were selected for full-text review, and 75 issues were identified. Discussions with 44 HCPs from seven countries and 52 patients from six countries showed that psychological symptoms, worries, and reduced functioning lasted the longest for patients, and there were considerable discrepancies between HCPs and patients concerning the importance of some of the symptoms. The final list included 73 issues, which were operationalized into an 80-item questionnaire. Conclusion: The resulting COVID-19 questionnaire covers health–related quality of life issues relevant to COVID-19 patients and is available in several languages. The next steps include testing of the applicability and patients’ acceptability of the questionnaire (Phase IIIA) and preliminary psychometric testing (Phase IIIB).

• Amdal, Cecilie Delphin; Falk, Ragnhild Sørum; Singer, Susanne; Pe, Madeline; Piccinin, Claire & Bottomley, Andrew [Show all 21 contributors for this article] (2022). A multicenter international prospective study of the validity and reliability of a COVID-19-specific health-related quality of life questionnaire. Quality of Life Research. ISSN 0962-9343. 32, p. 1–13. doi: 10.1007/s11136-022-03272-2. Full text in Research Archive Show summary

  Purpose: To develop and validate a health-related quality of life (HRQoL) questionnaire for patients with current or previous coronavirus disease (COVID-19) in an international setting. Methods: This multicenter international methodology study followed standardized guidelines for a four-phase questionnaire development. Here, we report on the pretesting and validation of our international questionnaire. Adults with current or previous COVID-19, in institutions or at home were eligible. In the pretesting, 54 participants completed the questionnaire followed by interviews to identify administration problems and evaluate content validity. Thereafter, 371 participants completed the revised questionnaire and a debriefing form to allow preliminary psychometric analysis. Validity and reliability were assessed (correlation-based methods, Cronbach’s α, and intra-class correlation coefficient). Results: Eleven countries within and outside Europe enrolled patients. From the pretesting, 71 of the 80 original items fulfilled the criteria for item-retention. Most participants (80%) completed the revised 71-item questionnaire within 15 min, on paper (n = 175) or digitally (n = 196). The final questionnaire included 61 items that fulfilled criteria for item retention or were important to subgroups. Item-scale correlations were > 0.7 for all but nine items. Internal consistency (range 0.68–0.92) and test–retest results (all but one scale > 0.7) were acceptable. The instrument consists of 15 multi-item scales and six single items. Conclusion: The Oslo COVID-19 QLQ-W61© is an international, stand-alone, multidimensional HRQoL questionnaire that can assess the symptoms, functioning, and overall quality of life in COVID-19 patients. It is available for use in research and clinical practice. Further psychometric validation in larger patient samples will be performed.

• Amdal, Cecilie Delphin; Pe, Madeline; Falk, Ragnhild Sørum; Piccinin, Claire; Bottomley, Andrew & Arraras, Juan Ignacio [Show all 16 contributors for this article] (2021). Health-related quality of life issues, including symptoms, in patients with active COVID-19 or post COVID-19; a systematic literature review. Quality of Life Research. ISSN 0962-9343. doi: 10.1007/s11136-021-02908-z. Full text in Research Archive Show summary

  Purpose This systematic review was performed to identify all relevant health-related quality of life (HRQoL) issues associated with COVID-19. Methods A systematic literature search was undertaken in April 2020. In four teams of three reviewers each, all abstracts were independently reviewed for inclusion by two reviewers. Using a pre-defined checklist of 93 criteria for each publication, data extraction was performed independently by two reviewers and subsequently compared and discussed. If necessary, a third reviewer resolved any discrepancies. The search was updated in February 2021 to retrieve new publications on HRQoL issues including issues related to the long-term consequences of COVID-19. Results The search in April 2020 identified 3342 potentially relevant publications, and 339 publications were selected for full-text review and data extraction. We identified 75 distinct symptoms and other HRQoL issues categorized into 12 thematic areas; from general symptoms such as fever, myalgia, and fatigue, to neurological and psychological issues. The updated search revealed three extra issues experienced during active disease and long-term problems with fatigue, psychological issues and impaired cognitive function. Conclusion This first comprehensive systematic review provides a detailed overview of the wide range of HRQoL issues experienced by patients with COVID-19 throughout the course of the disease. It demonstrates the devastating impact of the disease and provides critically important information for clinicians, to enable them to better recognize the disease and to provide knowledge important for treatment and follow-up. The results provided the foundation for the international development of a COVID-19 specific patient-reported HRQoL questionnaire.

• Singer, Susanne; Hammerlid, Eva; Tomaszewska, Iwona M; Amdal, Cecilie Delphin; Bjordal, Kristin & Herlofson, Bente Brokstad [Show all 31 contributors for this article] (2021). Methodological approach for determining the Minimal Important Difference and Minimal Important Change scores for the European Organisation for Research and Treatment of Cancer Head and Neck Cancer Module (EORTC QLQ-HN43) exemplified by the Swallowing scale. Quality of Life Research. ISSN 0962-9343. doi: 10.1007/s11136-021-02939-6. Full text in Research Archive
• Astrup, Guro Lindviksmoen; Rohde, Gudrun E.; Rimehaug, Stein Arne; Andersen, Marit Helen; Bernklev, Tomm & Bjordal, Kristin [Show all 11 contributors for this article] (2021). Comparing the use of patient-reported outcomes in clinical studies in Europe in 2008 and 2018: a literature review. Quality of Life Research. ISSN 0962-9343. 31. doi: 10.1007/s11136-021-02946-7. Full text in Research Archive Show summary

  Purpose Several guidelines for the use of patient-reported outcomes (PROs) in clinical studies have been published in the past decade. This review primarily aimed to compare the number and compliance with selected PRO-specifc criteria for reporting of clinical studies in Europe using PROs published in 2008 and 2018. Secondarily, to describe the study designs, PRO instruments used, patient groups studied, and countries where the clinical studies were conducted. Methods A literature search was conducted in MEDLINE to identify eligible publications. To assess the number of publications, all abstracts were screened for eligibility by pairs of reviewers. Compliance with PRO-specifc criteria and other key characteristics was assessed in a random sample of 150 eligible full-text publications from each year. Randomized controlled trials (RCTs) were assessed according to the full CONSORT-PRO checklist. Results The search identifed 1692 publications in 2008 and 4290 in 2018. After screening of abstracts, 1240 from 2008 and 2869 from 2018 were clinical studies using PROs. By full-text review, the proportion of studies discussing PRO-specifc limitations and implications was higher in 2018 than in 2008, but there were no diferences in the other selected PRO-specifc criteria. In 2018, a higher proportion of studies were longitudinal/cohort studies, included≥300 patients, and used electronic administration of PRO than in 2008. The most common patient groups studied were those with cancer or diseases of the musculoskeletal system or connective tissue. Conclusion The number of clinical studies from Europe using PROs was higher in 2018 than in 2008, but there was little diference in compliance with the PRO-specifc criteria. The studies varied in terms of study design and PRO instruments used in both publication years.

• Astrup, Guro Lindviksmoen; Hofsø, Kristin; Bjordal, Kristin & Rustøen, Tone (2020). Cancer patients’ diagnosis and symptoms and their family caregivers’ self-efficacy and social support are associated with different caregiver reactions. European Journal of Cancer Care. ISSN 0961-5423. 29:e13311(6), p. 1–10. doi: 10.1111/ecc.13311. Full text in Research Archive
• Mierzynska, Justyna; Piccinin, Claire; Pe, Madeline; Martinelli, Francesca; Gotay, Carolyn & Coens, Corneel [Show all 13 contributors for this article] (2019). Prognostic value of patient-reported outcomes from international randomised clinical trials on cancer: a systematic review. The Lancet Oncology. ISSN 1470-2045. 20(12), p. e685–e698. doi: 10.1016/S1470-2045(19)30656-4. Full text in Research Archive
• Singer, Susanne; Amdal, Cecilie Delphin; Hammerlid, Eva; Tomaszewska, Iwona M.; Silva, Joaquim Castro & Mehanna, Hisham [Show all 33 contributors for this article] (2019). International validation of the revised European Organisation for Research and Treatment of Cancer Head and Neck Cancer Module, the EORTC QLQ-HN43: Phase IV. Head and Neck. ISSN 1043-3074. p. 1–13. doi: 10.1002/hed.25609. Full text in Research Archive
• Astrup, Guro Lindviksmoen; Rustøen, Tone; Hofsø, Kristin; Gran, Jon Michael & Bjordal, Kristin (2017). Symptom burden and patient characteristics: Association with quality of life in patients with head and neck cancer undergoing radiotherapy. Head and Neck. ISSN 1043-3074. 39(10), p. 2114–2126. doi: 10.1002/hed.24875. Full text in Research Archive
• Astrup, Guro Lindviksmoen; Hofsø, Kristin; Bjordal, Kristin; Guren, Marianne; Vistad, Ingvild & Cooper, Bruce [Show all 8 contributors for this article] (2017). Patient factors and quality of life outcomes differ among four subgroups of oncology patients based on symptom occurrence. Acta Oncologica. ISSN 0284-186X. 56(3), p. 462–470. doi: 10.1080/0284186X.2016.1273546. Full text in Research Archive
• Amdal, Cecilie Delphin; Jacobsen, Anne-Birgitte; Falk, Ragnhild Sørum; Johnson, Egil; Os, Silje Skjelsvik & Warloe, Trond [Show all 7 contributors for this article] (2017). Improved treatment decisions in patients with esophageal cancer. Acta Oncologica. ISSN 0284-186X. 56(10), p. 1286–1294. doi: 10.1080/0284186X.2017.1346379. Full text in Research Archive
• Hjermstad, Marianne Jensen; Bergenmar, Mia; Bjordal, Kristin; Fisher, Sheila E.; Hofmeister, Dirk & Montel, Sébastien [Show all 16 contributors for this article] (2016). International field testing of the psychometric properties of an EORTC quality of life module for oral health: the EORTC QLQ-OH15. Supportive Care in Cancer. ISSN 0941-4355. 24(9), p. 3915–3924. doi: 10.1007/s00520-016-3216-0. Full text in Research Archive
• Quinten, Chantal; Coens, Corneel; Ghislain, Irina; Zikos, Efstathios; Sprangers, Mirjam A.G. & Ringash, Jolie [Show all 20 contributors for this article] (2015). The effects of age on health-related quality of life in cancer populations: A pooled analysis of randomized controlled trials using the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 involving 6024 cancer patients. European Journal of Cancer. ISSN 0959-8049. 51(18), p. 2808–2819. doi: 10.1016/j.ejca.2015.08.027. Full text in Research Archive
• Astrup, Guro Lindviksmoen; Rustøen, Tone; Miaskowski, Christine; Paul, Steven M. & Bjordal, Kristin (2015). A longitudinal study of depressive symptoms in patients with head and neck cancer undergoing radiotherapy. Cancer Nursing. ISSN 0162-220X. 38(6), p. 436–446. doi: 10.1097/NCC.0000000000000225. Full text in Research Archive Show summary

  Background: Although patients with head and neck cancer are at increased risk for depressive symptoms compared with other cancer patients, few longitudinal studies have evaluated changes in and predictors of this symptom over time. Objective: The aim of this study was to determine whether levels of depressive symptoms changed over time and whether specific demographic, clinical, symptom, or psychosocial characteristics were associated with depressive symptoms. Methods: In a longitudinal study of patients with head and neck cancer, depressive symptoms were assessed with the Center for Epidemiologic Studies–Depression scale, from the initiation of radiotherapy and for 6 months after. Hierarchical linear modeling was used to evaluate for changes in as well as for potential predictors of interindividual differences in depressive symptoms. Results: The severity of depressive symptoms increased during radiotherapy and then decreased over time. The portion of patients who reported clinically meaningful levels of depressive symptoms at each assessment ranged from 29% to 42%. Several known predictors of pretreatment severity of depressive symptoms (ie, physical symptoms, less social support, dissatisfaction with looks) were corroborated. In addition, having surgery before radiotherapy was associated with lower levels of depressive symptoms at initiation of radiotherapy. Conclusion: A moderate proportion of patients with head and neck cancer reported levels of depressive symptoms that indicated the need for clinical evaluation. Several patient characteristics were associated with depressive symptoms. Implications for Practice: Knowledge on prevalence, time course, and predictors of depressive symptoms from this study can be used to identify patients at higher risk for more severe depressive symptoms. The final version of this research has been published in Cancer Nursing. © Lippincott, Williams & Wilkins.

• Astrup, Guro Lindviksmoen; Rustøen, Tone; Miaskowski, Christine; Paul, Steven M & Bjordal, Kristin (2015). Changes in and predictors of pain characteristics in patients with head and neck cancer undergoing radiotherapy. Pain. ISSN 0304-3959. 156(5), p. 967–979. doi: 10.1097/j.pain.0000000000000142. Full text in Research Archive Show summary

  Abstract: Pain is a common symptom in patients with head and neck cancer (HNC) that is associated with significant decrements in physical and psychological functioning. Only 4 studies have evaluated for changes in and predictors of different pain characteristics in these patients. In this longitudinal study of patients with HNC, changes in pain intensity (ie, average pain, worst pain), pain interference with function, and pain relief were evaluated from the initiation of radiotherapy and through the following 6 months. Hierarchical linear modeling was used to evaluate for changes over time in these 4 pain characteristics, as well as to identify predictors of interindividual variability in each characteristic. Overall, pain intensity and interference with function scores were in the mild-to-moderate range, while pain relief scores were in the moderate range. The occurrence of pain, as well as scores for each pain characteristic, increased from the initiation to the completion of radiotherapy, followed by a gradual decrease to near pretreatment levels at 6 months. However, interindividual variability existed in patients' ratings of each pain characteristic. Predictors of more severe pain characteristic scores were more comorbidities, worse physical functioning, not having surgery before radiotherapy, difficulty swallowing, mouth sores, sleep disturbance, fatigue, more energy, and less social support. Patients with more depressive symptoms had better pain relief. Although some of the predictors cannot be modified (eg, occurrence of surgery), other predictors (eg, symptoms) can be treated. Therefore, information about these predictors may result in decreased pain in patients with HNC.

• Cehajic, Irvin; Bergan, Stein & Bjordal, Kristin (2015). Pharmacist assessment of drug-related problems on an oncology ward. European Journal of Hospital Pharmacy (EJHP). ISSN 2047-9956. 22(4), p. 194–197. doi: 10.1136/ejhpharm-2014-000510. Full text in Research Archive
• Hofsø, Kristin; Bjordal, Kristin; Diep, Lien My & Rustøen, Tone (2014). The relationships between demographic and clinical characteristics and quality of life during and after radiotherapy: in women with breast cancer. Quality of Life Research. ISSN 0962-9343. 23(10), p. 2769–2777. doi: 10.1007/s11136-014-0736-2. Full text in Research Archive
• Quinten, Chantal; Martinelli, Francesca; Coens, Corneel; Sprangers, Mirjam A.G.; Ringash, Jolie & Gotay, Carolyn [Show all 19 contributors for this article] (2014). A global analysis of multitrial data investigating quality of life and symptoms as prognostic factors for survival in different tumor sites. Cancer. ISSN 0008-543X. 120(2), p. 302–311. doi: 10.1002/cncr.28382. Full text in Research Archive
• Amdal, Bente Cecilie Delphin; Jacobsen, Anne-Birgitte; Sandstad, Berit; Warloe, Trond & Bjordal, Kristin (2013). Palliative brachytherapy with or without primary stent placement in patients with oesophageal cancer, a randomised phase III trial. Radiotherapy and Oncology. ISSN 0167-8140. 107(3), p. 428–433. doi: 10.1016/j.radonc.2013.04.008. Full text in Research Archive
• Amdal, Bente Cecilie Delphin; Jacobsen, Anne-Birgitte; Guren, Marianne & Bjordal, Kristin (2013). Patient-reported outcomes evaluating palliative radiotherapy and chemotherapy in patients with oesophageal cancer: A systematic review. Acta Oncologica. ISSN 0284-186X. 52(4), p. 679–690. doi: 10.3109/0284186X.2012.731521. Full text in Research Archive
• Hofsø, Kristin; Rustøen, Tone; Cooper, Bruce A.; Bjordal, Kristin & Miaskowski, Christine (2013). Changes Over Time in Occurrence, Severity, and Distress of Common Symptoms During and After Radiation Therapy for Breast Cancer. Journal of Pain and Symptom Management. ISSN 0885-3924. 45(6), p. 980–1006. doi: 10.1016/j.jpainsymman.2012.06.003. Full text in Research Archive
• Hofsø, Kristin; Miaskowski, Christine; Bjordal, Kristin; Cooper, Bruce A. & Rustøen, Tone (2012). Previous Chemotherapy Influences the Symptom Experience and Quality of Life of Women With Breast Cancer Prior to Radiation Therapy. Cancer Nursing. ISSN 0162-220X. 35(3), p. 167–177. doi: 10.1097/NCC.0b013e31821f5eb5. Full text in Research Archive
• Andreassen, Trine Naalsund; Klepstad, Pål; Davies, Andrew; Bjordal, Kristin; Lundström, Staffan & Kaasa, Stein [Show all 7 contributors for this article] (2012). Is Oxycodone Efficacy Reflected in Serum Concentrations? A Multicenter, Cross-Sectional Study in 456 Adult Cancer Patients. Journal of Pain and Symptom Management. ISSN 0885-3924. 43(4), p. 694–705. doi: 10.1016/j.jpainsymman.2011.05.008. Full text in Research Archive
• Andreassen, Trine Naalsund; Eftedal, Ingrid; Klepstad, Pål; Davies, Andrew; Bjordal, Kristin & Lundström, Staffan [Show all 8 contributors for this article] (2012). Do CYP2D6 genotypes reflect oxycodone requirements for cancer patients treated for cancer pain? A cross-sectional mutlicentre study. European Journal of Clinical Pharmacology. ISSN 0031-6970. 68(1), p. 55–64. doi: 10.1007/s00228-011-1093-5. Full text in Research Archive
• Amdal, Cecilie Delphin; Jacobsen, Anne-Birgitte; Tausjø, Johan Elling; Wiig, Johan N.; Warloe, Trond & Sandstad, Berit [Show all 7 contributors for this article] (2011). Palliative interventions and prognosis in patients with advanced esophageal cancer. Diseases of the esophagus. ISSN 1120-8694. 24(7), p. 502–509. doi: 10.1111/j.1442-2050.2010.01174.x. Full text in Research Archive
• Andreassen, Trine Naalsund; Klepstad, Pål; Davies, Andrew; Bjordal, Kristin; Lundström, Staffan & Kaasa, Stein [Show all 7 contributors for this article] (2011). Influences on the pharmacokinetics of oxycodone: a multicentre cross-sectional study in 439 adult cancer patients. European Journal of Clinical Pharmacology. ISSN 0031-6970. 67(5), p. 493–506. doi: 10.1007/s00228-010-0948-5. Full text in Research Archive
• Klepstad, Pål; Fladvad, Torill; Skorpen, Frank; Bjordal, Kristin; Caraceni, Augusto & Dale, Ola [Show all 16 contributors for this article] (2011). Influence from genetic variability on opioid use for cancer pain: A European genetic association study of 2294 cancer pain patients. Pain. ISSN 0304-3959. 152(5), p. 1139–1145. doi: 10.1016/j.pain.2011.01.040. Full text in Research Archive Show summary

  Abstract Cancer pain patients need variable opioid doses. Preclinical and clinical studies suggest that opioid efficacy is related to genetic variability. However, the studies have small samples, findings are not replicated, and several candidate genes have not been studied. Therefore, a study of genetic variability with opioid doses in a large population using a confirmatory validation population was warranted. We recruited 2294 adult European patients using a World Health Organization (WHO) step III opioid and analyzed single nucleotide polymorphisms (SNPs) in genes with a putative influence on opioid mechanisms. The patients’ mean age was 62.5 years, and the average pain intensity was 3.5. The patients’ primary opioids were morphine (n = 830), oxycodone (n = 446), fentanyl (n = 699), or other opioids (n = 234). Pain intensity, time on opioids, age, gender, performance status, and bone or CNS metastases predicted opioid dose and were included as covariates. The patients were randomly divided into 1 development sample and 1 validation sample. None of 112 SNPs in the 25 candidate genes OPRM1, OPRD1, OPRK1, ARRB2, GNAZ, HINT1, Stat6, ABCB1, COMT, HRH1, ADRA2A, MC1R, TACR1, GCH1, DRD2, DRD3, HTR3A, HTR3B, HTR2A, HTR3C, HTR3D, HTR3E, HTR1, or CNR1 showed significant associations with opioid dose in both the development and the validation analyzes. These findings do not support the use of pharmacogenetic analyses for the assessed SNPs to guide opioid treatment. The study also demonstrates the importance of validating findings obtained in genetic association studies to avoid reporting spurious associations as valid findings. To elicit knowledge about new genes that influence pain and the need for opioids, strategies other than the candidate gene approach is needed.

• Laugsand, Eivor Alette; Sprangers, Mirjam A. G.; Bjordal, Kristin; Skorpen, Frank; Kaasa, Stein & Klepstad, Pål (2010). Health care providers underestimate symptom intensities of cancer patients: A multicenter European study. Health and Quality of Life Outcomes. 8(1), p. 104–104. doi: 10.1186/1477-7525-8-104. Full text in Research Archive Show summary

  Background Many patients with advanced cancer depend upon health care providers for symptom assessment. The extent of agreement between patient and provider symptom assessments and the association of agreement with demographic- and disease-related factors was examined. Methods This cross-sectional study included 1933 patient-health care provider dyads, from 11 European countries. Patients reported symptoms by using the four-point scales of the European Organization of Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30) version 3, and providers used corresponding four-point categorical scales. Level of agreement was addressed at the group level (Wilcoxon Signed-Rank test), by difference scores (provider score minus patient score), at the individual level (Intraclass Correlation Coefficients, ICCs) and visually by Bland-Altman plots. Absolute numbers and chi-square tests were used to investigate the relationship between agreement and demographic-, as well as disease-related factors. Results The prevalence of symptoms assessed as moderate or severe by patients and providers, respectively, were for pain (67 vs.47%), fatigue (71 vs. 54%), generalized weakness (65 vs. 47%), anorexia (47 vs. 25%), depression (31 vs. 17%), constipation (45 vs. 30%), poor sleep (32 vs. 21%), dyspnea (30 vs. 16%), nausea (27 vs. 14%), vomiting (14 vs. 6%) and diarrhea (14 vs. 6%). Symptom scores were identical or differed by only one response category in the majority of patient-provider assessment pairs (79-93%). Providers underestimated the symptom in approximately one of ten patients and overestimated in 1% of patients. Agreement at the individual level was moderate (ICC 0.38 to 0.59). Patients with low Karnofsky Performance Status, high Mini Mental State-score, hospitalized, recently diagnosed or undergoing opioid titration were at increased risk of symptom underestimation by providers (all p < 0.001). Also, the agreement was significantly associated with drug abuse (p = 0.024), provider profession (p < 0.001), cancer diagnosis (p < 0.001) and country (p < 0.001). Conclusions Considerable numbers of health care providers underestimated symptom intensities. Clinicians in cancer care should be aware of the factors characterizing patients at risk of symptom underestimation.

• Amdal, Cecilie Delphin; Jacobsen, Anne-Birgitte; Tausjø, Johan Elling; Wiig, Johan N.; Warloe, Trond & Karlsen, Karl Otto [Show all 8 contributors for this article] (2010). Radical treatment for oesophageal cancer patients unfit for surgery and chemotherapy. A 10-year experience from the Norwegian Radium Hospital. Acta Oncologica. ISSN 0284-186X. 49(2), p. 209–218. doi: 10.3109/02841860903246573. Full text in Research Archive
• Utne, Inger; Miaskowski, Christine; Bjordal, Kristin; Paul, Steven M. & Rustøen, Tone (2010). The Relationships between Mood Disturbances and Pain, Hope, and Quality of Life in Hospitalized Cancer Patients with Pain on Regularly Scheduled Opioid Analgesic. Journal of Palliative Medicine. ISSN 1096-6218. 13(3), p. 311–318. doi: 10.1089/jpm.2009.0294. Full text in Research Archive Show summary

  Objective: The study purposes were to describe the percentage of patients in one of four mood groups (i.e., neither anxiety nor depression [NEITHER], only anxiety [ANX], only depression [DEP], both anxiety and depression [BOTH]) and to evaluate how differences in mood states are related to pain, hope, and quality of life (QOL). Methods: Oncology inpatients (n=225) completed Brief Pain Inventory, Herth Hope Index (HHI), and the European Organization for Research and Treatment of Cancer Core QOL Questionnaire-C30. Research nurses completed Symptom Severity Checklist, Karnofsky Performance Status score, and medical record reviews. Data were analyzed using x^2, Kruskal-Wallis, one-way analyses of variance (ANOVAs), and analyses of covariance (ANCOVA). Results: Thirty-two percent of patients were categorized in the NEITHER group, 12% in the ANX group, 12% in the DEP group, and 44% in the BOTH group. Younger patients and women were more likely to be in the BOTH group. While only minimal differences were found among the mood groups on pain intensity scores, patients in the NEITHER group in general, reported lower pain interference scores than those in the other three groups. Significant differences were found in HHI scores between the patients in the NEITHER group and the BOTH group. In addition, patients with both mood disorders reported significantly poorer QOL scores. Conclusions: Because 44% of the patients had both anxiety and depression, clinicians need to evaluate patients for the co-occurrence of these two symptoms, evaluate its impact on pain management, hope, and QOL, and develop appropriate interventions to manage these symptoms.

• Valeberg, Berit Taraldsen; Bjordal, Kristin & Rustøen, Tone (2010). Smertebehandling av kreftpasienter : kreftpasienters barrierer mot smertebehandling. Sykepleien Forskning. ISSN 1890-2936. p. 266–276. Full text in Research Archive
• Utne, Inger; Miaskowski, Christine; San, C; Bjordal, Kristin; Cooper, Bruce A & Valeberg, Berit Taraldsen [Show all 8 contributors for this article] (2009). Confirmatory Factor Analysis of the Coping Strategies Questionnaire-Revised in Samples of Oncology Outpatients and Inpatients with Pain. The Clinical Journal of Pain. ISSN 0749-8047. 25(5), p. 391–400. doi: 10.1097/AJP.0b013e318195ed9b. Full text in Research Archive
• Elmqvist, MA; Jordhøy, Marit S; Bjordal, Kristin; Kaasa, Stein & Jannert, M. (2009). Health-related quality of life during the last three months of life in patients with advanced cancer. Supportive Care in Cancer. ISSN 0941-4355. 17(2), p. 191–198. doi: 10.1007/s00520-008-0477-2. Full text in Research Archive
• Bower, W.F.; Vlantis, A.C.; Chung, T.M.L.; Cheung, S.K.C.; Bjordal, Kristin & Hasselt, C.A. Van (2009). Quality of life in head and neck cancer patients after surgical resection: translation into Cantonese and validation of the EORTC QLQ-H&amp;N35. Acta Oto-Laryngologica. ISSN 0001-6489. 129(7), p. 779–785. doi: 10.1080/00016480802398970. Full text in Research Archive
• Utne, Inger; Miaskowski, Christine; Bjordal, Kristin; Paul, Steven M.; Jakobsen, Gunnhild & Rustøen, Tone [Show all 7 contributors for this article] (2009). Differences in the Use of Pain Coping Strategies Between Oncology Inpatients with Mild vs. Moderate to Severe Pain. Journal of Pain and Symptom Management. ISSN 0885-3924. 38(5), p. 717–726. doi: 10.1016/j.jpainsymman.2009.03.005. Full text in Research Archive
• Quinten, Chantal; Coens, Corneel; Mauer, Murielle; Comte, Sylvie; Sprangers, Mirjam A. G. & Cleeland, Charles [Show all 9 contributors for this article] (2009). Baseline quality of life as a prognostic indicator of survival: a meta-analysis of individual patient data from EORTC clinical trials. The Lancet Oncology. ISSN 1470-2045. 10(9), p. 865–871. doi: 10.1016/S1470-2045(09)70200-1. Full text in Research Archive
• Ahlner-Elmqvist, M; Bjordal, K; Jordhøy, M.S.; Kaasa, Stein & Jannert, M. (2009). Characteristics and implications of attrition in health-related quality of life studies in palliative care. Palliative Medicine. ISSN 0269-2163. 23(5), p. 432–440. doi: 10.1177/0269216309104057. Full text in Research Archive
• Valeberg, Berit Taraldsen; Miaskowski, C; Hanestad, Berit Rokne; Hanestad, BR; Bjordal, K & Moum, T [Show all 8 contributors for this article] (2008). Prevalence rates for and predictors of self-reported adherence of oncology outpatients with analgesic medications. The Clinical Journal of Pain. ISSN 0749-8047. 24, p. 627–636. Full text in Research Archive
• Ahlner-Elmqvist, Marianne; Jordhøy, Marit S; Bjordal, Kristin; Jannert, M. & Kaasa, Stein (2008). Characteristics and quality of life of patients who choose home care at the end of life. Journal of Pain and Symptom Management. ISSN 0885-3924. 36(3), p. 217–227. doi: 10.1016/j.jpainsymman.2007.10.010. Full text in Research Archive
• Utne, Inger; Miaskowski, Christine; Bjordal, Kristin; Paul, Steven M.; Jakobsen, Gunnhild & Rustøen, Tone (2008). The relationship between hope and pain in a sample of hospitalized oncology patients. Palliative & Supportive Care. ISSN 1478-9515. 6, p. 327–334. doi: 10.1017/S1478951508000527. Full text in Research Archive Show summary

  ABSTRACT Objective: The aims of this study were to describe hope in a sample of hospitalized oncology inpatients in pain and to determine if various demographic, clinical, and pain characteristics were related to hope. In addition, the individual item and total Herth Hope Index (HHI) scores for these oncology inpatients with pain were compared with those from the general Norwegian population. Methods: Oncology inpatients in pain (n=225) were recruited from the Norwegian Radium Hospital. The research instruments included HHI, Brief Pain Inventory (BPI), and European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Data were analyzed using descriptive statistics, Pearson’s correlations, and one-sample t-tests. Results: Total HHI scores in oncology inpatients with pain were comparable to a similar sample in Taiwan. The Norwegian oncology inpatients reported significantly higher total HHI scores than the general Norwegian population. The largest difference was on the item “I feel scared about my future”. No relationships were found between total HHI scores and any of the pain intensity scores. Significant relationships were found between total HHI scores and the more psychosocial interference items on BPI and sleep. Significance of the research: The higher levels of hope in the oncology inpatients with pain compared with the general Norwegian population may reflect a “response shift” in the patients’ evaluation of hope. While the difference is relatively small, it may represent a clinically meaningful difference. The fact that significant relationships were found between HHI scores and the more psychosocial interference scores on BPI suggest that hope may be more related to psychosocial effects on pain than on its physical effects.

• Valeberg, Berit Taraldsen; Rustøen, Tone; Bjordal, K; Hanestad, BR; Hanestad, Berit Rokne & Paul, S [Show all 8 contributors for this article] (2008). Self-reported prevalence, etiology, and characteristics of pain in oncology outpatients. European Journal of Pain. ISSN 1090-3801. 12, p. 582–590. doi: 10.1016/j.ejpain.2007.09.004. Full text in Research Archive
• Nordgren, M; Hammerlid, E; Bjordal, Kristin; Ahlner-Elmqvist, M; Boysen, Morten Ebbe & Jannert, M (2008). Quality of life in oral carcinoma: A 5-year prospective study. Head and Neck. ISSN 1043-3074. 30. doi: 10.1002/hed.20735. Full text in Research Archive
• Valeberg, Berit Taraldsen; Miaskowski, Christine; Hanestad, Berit Rokne; Hanestad, Berit Rokne; Bjordal, Kristin & Paul, Steven [Show all 7 contributors for this article] (2008). Demographic, Clinical, and Pain Characteristics Are Associated With Average Pain Severity Groups in a Sample of Oncology Outpatients. Journal of Pain. ISSN 1526-5900. 9(10), p. 873–882. doi: 10.1016/j.jpain.2008.05.001. Full text in Research Archive
• Valeberg, Berit Taraldsen; Rustøen, Tone; Bjordal, Kristin; Hanestad, Berit Rokne; Paul, Steven & Miaskowski, Christine (2007). Self-reported prevalence, etiology, and characteristics of pain in oncology outpatients. European Journal of Pain. ISSN 1090-3801. Full text in Research Archive
• Loge, Jon Håvard; Bjordal, Kristin; Paulsen, Ørnulf & Kaasa, Stein (2007). Den palliative konsultasjon. In Kaasa, Stein (Eds.), Palliasjon Nordisk lærebok. Gyldendal Akademisk. ISSN 9788205351813. p. 63–74. Full text in Research Archive
• Nordgren, M; Jannert, M; Boysen, Morten Ebbe; Ahiner-Elmqvist, M; Silander, E & Bjordal, K [Show all 7 contributors for this article] (2006). Health-related quality of life in patients with pharyngeal carcinoma: A five-year follow-up. Head and Neck. ISSN 1043-3074. 28, p. 339–349. Full text in Research Archive
• Abendstein, Helmut; Nordgren, Mats; Boysen, Morten Ebbe; Jannert, Magnus; Silander, Ewa & Ahlner-Elmqvist, Marianne [Show all 8 contributors for this article] (2005). Quality of Life and Head and Neck Cancer: A 5 Year Prospective Study. The Laryngoscope. ISSN 0023-852X. 115, p. 2183–2192. Full text in Research Archive
• Abendstein, Helmut; Nordgren, Mats; Boysen, Morten; Jannert, Magnus; Silander, Ewa & Ahlner-Elmqvist, Marianne [Show all 8 contributors for this article] (2005). Quality of Life and Head and Neck Cancer: A 5 Year Prospective Study. The Laryngoscope. ISSN 0023-852X. 115(12), p. 2183–2192. Full text in Research Archive
• Nordgren, Mats; Abendstein, Helmut; Jannert, Magnus; Boysen, Morten; Ahlner-Elmqvist, Marianne & Silander, Ewa [Show all 8 contributors for this article] (2003). Health-related quality of life five years after diagnosis of laryngeal carcinoma. Clinical Investigation. International Journal of Radiation Oncology, Biology, Physics. ISSN 0360-3016. 56(5), p. 1333–1343. doi: 10.1016/S0360-3016(03)00292-X. Full text in Research Archive
• Bjordal, Kristin (2002). The development and utilisation of the European Organisation for research and treatment of cancer quality of life group item bank. European Journal of Cancer. ISSN 0959-8049. 38, p. 1611–1614. Full text in Research Archive
• Evensen, Jan F.; Bjordal, Kristin; Knutsen, B.H.; Olsen, Dag Rune; Støre, Geir & Tausjø, Johan (2002). Side effects and quality of life after inadvertent radiation overdosage in brachytherapy of head-and-neck cancer. International Journal of Radiation Oncology, Biology, Physics. ISSN 0360-3016. 52(4), p. 944–952. Full text in Research Archive
• Hammerlid, Eva; Bjordal, Kristin; Ahlner-Elmqvist, Marianne; Boysen, Morten; Evensen, Jan F. & Björklund, Anders [Show all 8 contributors for this article] (2001). A prospective study of quality of life in head and neck cancer patients. Part I: at diagnoses. The Laryngoscope. ISSN 0023-852X. 111, p. 669–680. Full text in Research Archive
• Bjordal, Kristin; Ahlner-Elmqvist, Marianne; Hammerlid, Eva; Boysen, Morten; Evensen, Jan F. & Björklund, Anders [Show all 9 contributors for this article] (2001). A prospective study of quality of life in head and neck cancer patients. Part II: longitudinal data. The Laryngoscope. ISSN 0023-852X. 111, p. 1440–1452. Full text in Research Archive
• Bjordal, Kristin; Ahlner-Elmqvist, Marianne; Hammerlid, Eva; Boysen, Morten Ebbe; Evensen, Jan F. & Biörklund, Anders [Show all 9 contributors for this article] (2001). A Prospective Study of Quality of Life in Head and Neck Cancer Patients. Part II: Longitudinal Data. The Laryngoscope. ISSN 0023-852X. 111, p. 1440–1452. Full text in Research Archive
• Hammerlid, Eva; Bjordal, Kristin; Ahlner-Elmqvist, Marianne; Boysen, Morten Ebbe; Evensen, Jan F. & Biörklund, Anders [Show all 10 contributors for this article] (2001). A Prospective Study of Quality of Life in Head and Neck Cancer Patients. Part I: At Diagnosis. The Laryngoscope. ISSN 0023-852X. 111, p. 669–680. Full text in Research Archive
• Bjordal, K; Graeff, A de; Fayers, Peter; Hammerlid, E; Pottelsberghe, C van & Curran, D [Show all 12 contributors for this article] (2000). A 12 country field study of the EORTC QLQ-C30 (version 3.0) and the head and neck cancer specific module (EORTC QLQ-H&N35) in head and neck patients. European Journal of Cancer. ISSN 0959-8049. p. 1796–1807. Full text in Research Archive
• Bjordal, Kristin; DeGraeff, Alexander; Fayers, PM; Hammerlid, Eva; Pottelsberghe, C van & Curran, D [Show all 19 contributors for this article] (2000). A 12 country field study of the EORTC QLQ-C30 (version 3.0) and the head and neck cancer specific module (EORTC QLQ-H&N35) in head and neck patients. EORTC Quality of Life Group. European Journal of Cancer. ISSN 0959-8049. 36(14), p. 1796–17807. Full text in Research Archive
• Mella, Olav; Melien, Ø; Bjordal, K & Kaasa, S (1999). Kvalme og oppkast ved cytostaticabehandling. In Dahl, Olav; Christoffersen, Thoralf; Kvaløy, Stein O & Baksaas, Ingebjørg (Ed.), Cytostatika. Medikamentell kreftbehandling [6. utg.]. Universitetet i Oslo. p. 96–103. Full text in Research Archive
• Ringdal, Kristen; Ringdal, Gerd Inger; Kaasa, Stein; Bjordal, Kristin; Wisløff, Fredrik & Sundstrøm, Stein Harald [Show all 7 contributors for this article] (1999). Assessing the consistency of psychometric properties of the HRQL scales within the EORTC QLQ-C30 across populations by means of the Mokken Scaling Model. Quality of Life Research. ISSN 0962-9343. 8, p. 25–43. Full text in Research Archive

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• Taylor, Katherine J.; Amdal, Cecilie Delphin; Bjordal, Kristin; Astrup, Guro Lindviksmoen; Herlofson, Bente Brokstad & Duprez, Fréderic [Show all 37 contributors for this article] (2025). Reply to ‘Comment on “Toxicities in long‐term survivors of head and neck cancer—A multi‐national cross‐sectional analysis”’. International Journal of Cancer. ISSN 0020-7136. doi: 10.1002/ijc.70292. Full text in Research Archive
• Astrup, Guro Lindviksmoen; Rohde, Gudrun E.; Rimehaug, Stein Arne; Andersen, Marit Helen; Bernklev, Tomm & Bjordal, Kristin [Show all 10 contributors for this article] (2020). Comparing the use of patient-reported outcomes in clinical studies in Europe in 2008 and 2018; a literature review. Full text in Research Archive
• Bjordal, Kristin & Bottomley, Andrew (2017). Making Advances in Quality of Life Studies in Head and Neck Cancer. International Journal of Radiation Oncology, Biology, Physics. ISSN 0360-3016. 97(4), p. 659–661. doi: 10.1016/j.ijrobp.2016.11.051. Full text in Research Archive
• Astrup, Guro Lindviksmoen; Rustøen, Tone & Bjordal, Kristin (2016). Depressive symptoms and pain in patients with head and neck cancer who undergo radiotherapy. Full text in Research Archive
• Hjermstad, Marianne Jensen; Bergenmar, Mia; Bjordal, Kristin; Fisher, Sheila; Hofmeister, Dirk & Montel, Sebastien [Show all 16 contributors for this article] (2015). International field testing of the reliability, validity and psychometric properties of an EORTC quality of life module for dental and oral health; the EORTC QLQ-OH15. Full text in Research Archive
• Hjermstad, Marianne Jensen; Bergenmar, Mia; Bjordal, Kristin; Fisher, Sheila; Hofmeister, Dirk & Montel, Sebastian [Show all 16 contributors for this article] (2015). International Field testing of the reliability, validity and psycometric Properties of an EORTC quality of life module for dental and oral Health; the EORTC QLQ-OH15. Supportive Care in Cancer. ISSN 0941-4355. 23, p. S181–S181. Full text in Research Archive
• Astrup, Guro Lindviksmoen; Rustøen, Tone; Bjordal, Kristin; Miaskowski, Christine & Paul, Steven M. (2014). Depressive symptoms in patients with head and neck cancer who undergo radiotherapy. Full text in Research Archive
• Astrup, Guro Lindviksmoen; Rustøen, Tone; Bjordal, Kristin; Miaskowski, Christine & Paul, Steven M. (2014). Pain occurrence, intensity, interference with function, and relief in patients with head and neck cancer who undergo radiotherapy. Full text in Research Archive
• Amdal, Bente Cecilie Delphin & Bjordal, Kristin (2014). Er surrogatendepunkt i kliniske studier nyttige? :. Tidsskrift for Den norske legeforening (Tidsskriftet). ISSN 0029-2001. 134(11), p. 1128–1129. doi: 10.4045/tidsskr.14.0411. Full text in Research Archive
• Quinten, Chantal; Zikos, Efstathios; Sprangers, Miriam; Greimel, Eva; Martinelli, Francesca & Reeve, Bryce B. [Show all 20 contributors for this article] (2012). An international study of multitrial data investigating quality of life and symptoms as prognostic factors for survival in different cancer sites. Journal of Clinical Oncology. ISSN 0732-183X. 30(15). Full text in Research Archive
• Hofsø, Kristin; Bjordal, Kristin; Miaskowski, Christine & Rustøen, Tone (2011). Differences in symptom profile and QOL for women with breast cancer before start of radiotherapy. A comparison of patients with and without adjuvant chemotherapy. Full text in Research Archive
• Utne, Inger; Miaskowski, Christine; Bjordal, Kristin; Paul, Steven M. & Rustøen, Tone (2011). Hope in oncology patients on regularly scheduled opioid analgesics compared with the general population. Full text in Research Archive
• Herlofson, Bente Brokstad; Fisher, Sheila; Nicolatou-Galitis, Ourania; Verdonck, Irma; Bjordal, Kristin & Weis, Joachim [Show all 11 contributors for this article] (2010). The development of an Oral Health module supplemental to the EORTC QLQ-C30. Full text in Research Archive
• Laugsand, Eivor Alette; Sprangers, MAG; Bjordal, Kristin; Skorpen, Frank; Kaasa, Stein & Klepstad, Pål (2010). Health Care Providers Underestimate Symptom Intensities of Cancer Patients Recieving Palliative Care. Palliative Medicine. ISSN 0269-2163. 24(4), p. 34–34. Full text in Research Archive
• Klepstad, Pål; Fladvad, Torill; Skorpen, Frank; Bjordal, Kristin; Caraceni, Augusto & Dale, Ola [Show all 16 contributors for this article] (2010). The European Pharmacogenetic Opioid Study (EPOS): Influence from Genetic Variability on Opioid Use un 2209 Cancer Pain Patients. Palliative Medicine. ISSN 0269-2163. 24(4), p. 5–5. Full text in Research Archive
• Laugsand, Eivor Alette; Sprangers, Mirjam A. G.; Bjordal, Kristin; Skorpen, Frank & Klepstad, Pål (2010). Health care providers underestimate symptoms intensities in cancer patients receving palliative care. Full text in Research Archive
• Hjermstad, Marianne Jensen; Fisher, Sheila; Nicolatou-Galitis, Ourania; Weis, Joachim; Montel, Sebastian & Verdonck, Irma [Show all 9 contributors for this article] (2009). Development of an oral health related quality of life module: a presentation of phase 1 of three in the EORTC module development process. Full text in Research Archive
• Utne, Inger; Miaskowski, Christine; Bjordal, Kristin; Paul, Steven M. & Rustøen, Tone (2009). The effects of mood status on coping strategies and hope in oncology patients on regularly scheduled opioid analgesics. Full text in Research Archive
• Andreassen, Trine Naalsund; Klepstad, Pål; Davies, Andrew; Bjordal, Kristin; Lundström, Staffan & Fayers, Peter [Show all 8 contributors for this article] (2009). Can characteristics of patients predict serum concentrations and ratios of oxycodone, noroxycodone, noroxymorphone and oxymorphone? –A multicentre cross-sectional study. Full text in Research Archive
• Utne, Inger; Miaskowski, Christine; Bjordal, Kristin; Paul, Steven M. & Rustøen, Tone (2009). The effects of mood on pain and quality of life in oncology patients on regularly scheduled opioid analgesics. Full text in Research Archive
• Utne, Inger; Miaskowski, Christine; Bjordal, Kristin; Paul, Steven M.; Jakobsen, Gunnhild & Rustøen, Tone (2009). Differences in pain severity influence oncology patients' use of pain coping strategies. Full text in Research Archive
• Utne, Inger; Miaskowski, Christine; Bjordal, Kristin; Paul, Steven; Jakobsen, Gunnhild & Rustøen, Tone (2008). Differences in pain severity influence oncology patients' use of pain coping strategies. Full text in Research Archive
• Abendstein, Helmut; Nordgren, Mats; Boysen, Morten; Bjordal, Kristin & Hammerlid, Eva (2003). Quality of Life in Patients Treated for Head and Neck Cancer. Full text in Research Archive
• Abendstein, Helmut & Bjordal, Kristin (2000). Longitudinal livskvalitetsstudie ved hode-hals-kreft:data Göteborg Malmö Oslo. Full text in Research Archive
• Utne, Inger; Bjordal, Kristin & Rustøen, Tone (2010). Pain, hope, coping strategies, mood disturbances, and quality of life in cancer patients with pain. Clinical and methodological issues. Universitetet i Oslo. ISSN 9788282640503. Full text in Research Archive Show summary

  The aim of this study was to describe the experience of pain in hospitalized oncology patients taking opioids. In this thesis, the emotions and accompanying thoughts related to pain have a central role as physiologic, sensory, affective, cognitive, behavioural, and sociocultural dimensions are incorporated in a multidimensional perspective on pain. Oncology inpatients in pain (n=225) were recruited from the Norwegian Radium Hospital. The research instruments included Herth Hope Index (HHI), Brief Pain Inventory (BPI), Coping Strategies Questionnaire (CSQ), European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30), and Symptom Severity Checklist (SSC). Fifty-six per cent of the oncology inpatients had moderate to severe pain. These Norwegian oncology inpatients reported significantly higher total HHI scores than the general Norwegian population. No significant relationships were found between HHI scores and the more physical interference scores on BPI. This finding suggests that hope may be more related to psychosocial effects on pain than on its physical effects. In addition, the number and types of pain coping strategies used by these patients do not appear to be influenced by their pain intensity scores, except for catastrophizing. As many as 44% of the patients had both anxiety and depression, and minimal differences were found among the patients with different mood disturbances on pain intensity scores. In general, patients with no mood disturbances reported lower pain interference scores than the patients with mood disturbances. This finding suggests that mood disturbances in patients with cancer may be more closely associated with pain interference than with pain intensity. In addition, patients with no mood disturbances had higher hope than those with anxiety and depression.

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