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Background: The Abbey Pain Scale (APS) is an observational pain assessment instrument that was created for use among patients with dementia. It is sometimes used in Sweden to assess pain in patients with advanced cancer who are unable to vocalize their pain, but it has never been evaluated in this population.

Aim: To evaluate observational pain assessment for people with advanced cancer in a palliative care setting, focusing on the APS.

Methods: The APS was translated and adapted into a Swedish dementia context through interviews with health care professionals (n=11). The resulting APS-SE was then used in a qualitative content analysis exploring health care professionals’ experience of using the instrument in patients with advanced cancer (n=12). The psychometrics of the APS-SE when used in patients with advanced cancer (n=72) were determined through test-retest and inter-rater reliability, internal consistency reliability, and responsiveness to opioids. Criterion validity was determined against the patients’ self-reported pain (n=45).

Results: The APS-SE was comprehensible by users within dementia care, regardless of their educational and linguistic background. The qualitative analysis revealed that when used in patients with advanced cancer, the APS-SE fulfilled the need for an observational pain assessment instrument, but was not always on target and did not fully suit the clinical situation. The psychometric analysis showed slight criterion validity (κ=0.08) and unacceptable internal consistency reliability (Cronbach’s α=0.01). The test-retest reliability was good (ICC=0.82) and the inter-rater reliability moderate (ICC=0.64), but the latter had a confidence interval ranging from poor to good. Responsiveness to opioids was demonstrated (p=0.01).

Conclusions: This thesis underscores the need for a specialized observational pain assessment instrument explicitly tailored for patients with advanced cancer. The current lack of a recognized alternative emphasizes the importance of developing such an instrument to address the critical gap in observational pain assessment in the palliative oncology setting.

Background: The Abbey Pain Scale (APS), an observational scale used to assess pain in people with end-stage dementia, is also widely used in Sweden to assess pain in patients with advanced cancer. It is unclear whether the APS is appropriate in this context. This study aims to explore physicians’ and nurses’ experiences of using a Swedish translation of the APS (the APS-SE) in people with advanced cancer.

Methods: Conventional qualitative content analysis was used to analyse interviews with physicians (n = 6) and nurses (n = 6) working in oncology and specialised palliative care about their experiences of using the APS-SE.

Results: Three categories were created: fills a need, not always on target, and does not fully suit the clinical situation. Participants reported that although the APS-SE provides support in a challenging situation, it sometimes misses the mark: it does not distinguish well between pain and other types of suffering and its pain score tends not to reflect professionals’ intuitive perceptions of patients’ suffering. Some parts of the APS-SE were not considered useful, and others were perceived as ethically questionable.

Conclusion: Health professionals greatly need an observational pain assessment tool for people with advanced cancer. The APS-SE is helpful in this context, but participants did not perceive it as ideal. Its problems seem inherent to the original APS rather than related to its translation from English to Swedish. Further research is needed to provide a more suitable pain assessment tool for patients with advanced cancer.

Background: Patients with advanced cancer can be unable to verbalize their pain. The Abbey Pain Scale (APS), an observational tool, is used to assess pain in this setting, but has never been psychometrically tested for people with cancer. The aim of this study was to assess the validity, reliability, and the responsiveness of the APS to opioids for patients with advanced cancer in a palliative oncology care setting.

Material and Methods: Patients with advanced cancer and poor performance status, drowsiness, unconsciousness, or delirium, were assessed for pain using a Swedish translation of the APS (APS-SE) and, if possible, the Numeric Rating Scale (NRS). The assessments using APS were conducted simultaneously, but independently, by the same raters on two separate occasions, approximately one hour apart. Criterion validity was assessed by comparing the APS and NRS values using Cohen’s kappa (κ). Inter-rater reliability was determined using the intraclass correlation coefficient (ICC), internal consistency using Cronbach’s α, and responsiveness to opioids using the Wilcoxon signed-rank test.

Results: Seventy-two patients were included, of whom n = 45 could rate their pain using the NRS. The APS did not detect any of the n = 22 cases of moderate or severe pain self-reported using the NRS. The APS at first assessment had a κ of 0.08 (CI: −0.06 to 0.22) for criterion validity, an ICC of 0.64 (CI: 0.43–0.78) for inter-rater reliability, and a Cronbach’s α of 0.01 for internal consistency. The responsiveness to opioids was z = −2.53 (p = 0.01).

Conclusion: The APS was responsive to opioids but displayed insufficient validity and reliability and did not detect moderate or severe pain as indicated by the NRS. The study showed a very limited clinical use of the APS in patients with advanced cancer.

Aim: To translate and culturally adapt the APS for people with end-stage dementia in various care settings in Sweden and to investigate factors important for clinical implementation.

Design: Qualitative study design with interviews with care staff.

Methods: After an initial discussion of concepts, the Abbey Pain Scale was translated into Swedish and back into English to check for accuracy. The resulting Swedish version was then revised and culturally adapted through a series of interviews with nursing assistants, nurses and physicians (n = 11) to develop the final Swedish version.

Results: A Swedish version of the Abbey Pain Scale was developed. The instrument was considered straightforward and easy to use, but needed adjustments to make it more comprehensible to staff with less education in health care or with other first languages than Swedish. It was found important to carefully introduce new staff members to the instrument, to ensure they understand all the words and items.