ABSTRACT
BACKGROUND: Endometriosis is a frequent disease in women of reproductive age in which the endometrium occurs outside the uterine cavity. Multimodal treatment approaches are necessary due to loss of quality of life and the chronic nature of the disease. Digital health applications (DiGa) are becoming increasingly important. This research project investigates how a healthcare app can influence the subjective experience of illness in patients with endometriosis. METHODS: Empiric data were collected through semi-structured interviews. Data analysis was carried out using qualitative focussed interview analysis. Reliability was ensured by joint interdisciplinary and interprofessional evaluation of the interviews by experts and those affected. RESULTS: Ten patients with endometriosis and the prescribed healthcare app Endo-App© were examined. Categories were defined from the superordinate categories "Factors influencing the experience of illness" and "Evaluation of the app". The app provided reliable information, promoted self-efficacy through exercises and strengthened the perception of the individuality of the illness. It helped to minimise nocebo effects from internet research and enabled a positive change of perspective. Patients criticised the time required for data input and had data protection concerns. The educational elements were often seen as redundant. Some patients only used the app briefly, or not at all. CONCLUSION: Once a DiGa has been prescribed, it may be useful to explain its use on an outpatient basis and validate regular use. Blind re-prescribing of DiGas should be avoided. Younger patients with a recent diagnosis or patients following rehabilitation may benefit more from prescribing.
ABSTRACT
BACKGROUND: Patients are surviving tumor diseases longer and longer due to the improvement of tumor-specific therapy and pain is a common symptom. The gold standard for tumor-associated chronic pain is multimodal therapy. Non-adherence causes high costs and may put patients at risk. The aim of this study was to investigate the adherence behavior and subjective treatment compliance of patients with tumor-associated chronic pain. The focus was on the patients' perspective. Different groups of medications, such as NOPA, opioids, co-analgesics and cannabinoids, as well as non-drug treatments were included. METHODS: Semistructured guided interviews with 10 patients with chronic tumor pain were conducted within a qualitative research approach. The interviews were recorded and transcribed. The evaluation was using a focused content structuring interview analysis according to Kuckartz and Rädiker. RESULTS: Five main categories were defined. The central category based on the research question was "Adherence behavior from the patient's perspective." The category "Medication therapy" formed the framework of the study. Other main categories were "History of illness", "Relationship with treatment providers" and "Attitudes and beliefs". A total of 77 additional subcategories were formed and interpreted. Adherence behavior from the patients' perspective differed between the different medication groups. A palliative setting influenced treatment decisions and adherence. The medication regimens used were complex and dynamic, especially when there were multiple practitioners involved. Furthermore, there was ambiguity in the use of cannabinoids. Non-drug therapies were marginalized by patients. From the point of view of the patients interviewed, it was not so much the treatment providers who influenced their adherence behavior, but rather their own experiences, attitudes, and convictions. DISCUSSION: The study included all medication groups and non-drug therapies equally, complementing previous literature in a qualitative setting. Adherence factors known from previous research were reflected in the subjective perception of the group of patients with chronic pain after tumor diseases. Marginalization of non-medication methods could be explained by the fact that multimodal therapy approaches were too rarely constantly used and controlled in the phase of chronification. Therefore, drug and non-drug therapies should be applied even more consistently to patients with tumor-associated pain.
ABSTRACT
OBJECTIVES: To revise the 37-item Advanced Cancer Patients' Distress Scale (ACPDS) regarding its content, comprehensibility, applicability, and relevance by healthcare professionals (HCPs) and patients in order to enhance an existing instrument that is appropriate for the needs of patients with advanced cancer admitted to palliative care. DESIGN: A preliminary revision of items regarding psychometric indices and relevance to initially shorten the scale, complemented by cognitive interviews with patients combining think-aloud and verbal-probe techniques and an HCP focus group on the detected remaining items. Interviews and the focus group were audio-recorded, transcribed verbatim and analysed using MAXQDA. SETTING: The study took place at a German palliative care unit. PARTICIPANTS: 10 patients were interviewed (50% female) and 6 HCPs (3 physicians, 2 nurses and 1 psychologist) participated in the focus group. OUTCOME MEASURES: Comprehensibility, applicability, and relevance of the ACPDS were evaluated. RESULTS: Based on the psychometric revision, a reduced number of 17 items was discussed by the HCP focus group and within cognitive interviews with patients. For the rest of the analysis of the HCP focus group and the patient interview data, the introduction of the ACPDS was simplified and adapted to everyday language. As recommended by HCPs and patients, the example question was replaced. Nine items were reworded to boost clarity, openness, redundancy and mitigation. Three items were eliminated, and another three items were added. CONCLUSION: With this revised 17-item version of the ACPDS, we constructed an instrument that seems to be appropriate for the needs of patients with advanced cancer in a palliative care setting. In the next step, the shortened scale will be tested on psychometric data and validated by a large sample of inpatients on palliative care suffering from advanced cancer. TRIAL REGISTRATION NUMBER: DRKS ID: DRKS00022425.