Ann-Kristin Isaksson

Quality of life and impairment in patients with multiple sclerosis

Objectives: The aims of this study were to describe the quality of life in patients with multiple sclerosis (MS) given immunological treatment and in those not given immunological treatment and to investigate the relationship between impairment and quality of life. Methods: Twenty nine patients given immunological treatment were matched with the same number of patients not given such treatment. Matching variables were sex, Kurtzke’s Expanded Disability Status Scale (EDSS), years since diagnosis, and age (total n = 58). The patients were interviewed using the self-reported impairment checklist and they answered two questionnaires on quality of life, the 36-Item Short-Form Health Survey (SF-36) and the Subjective Estimation of Quality of Life (SQoL). Results: The self-reported impairment checklist captured a more differentiated picture of the patients’ symptoms of MS than the EDSS. Health related quality of life was markedly reduced, while the subjective quality of life was less affected. There was a stronger association between self-reported ratings of impairment and health related quality of life on the SF-36 than between impairment and global ratings of quality of life on the SQoL. Subjective quality of life on the SQoL was not directly dependent on impairment expressed in physical limitations. There were no statistically significant differences between the treated and untreated groups. A non-significant trend towards better health related quality of life was found in favour of the treated group with respect to emotional role, physical role, and social function on the SF-36. Conclusions: The self-reported impairment checklist and SF-36 proved to be valuable complements to the well established EDSS in describing the diverse symptoms of MS. Measuring both health related quality of life and subjective wellbeing provides valuable knowledge about the consequences of MS.

Feasibility of an interactive ICT-platform for early assessment and management of patient-reported symptoms during radiotherapy for prostate cancer

PURPOSE The aim of this study was to test the feasibility and acceptability of an Information and Communication Technology platform for assessing and managing patient reported symptoms during radiotherapy for prostate cancer. METHODS In cooperation with a health management company, using a patient experience co-design, we developed the platform operated by an interactive application for reporting and managing symptoms in real time. Nine patients diagnosed with prostate cancer and receiving radiotherapy were recruited from two university hospitals in Sweden. Evidence-based symptoms and related self-care advice specific to prostate cancer were implemented in the application based on a literature review and interviews with patients and health care professionals. In the test of the platform the patients reported symptoms, via a mobile phone, daily for two weeks and were afterwards interviewed about their experiences. RESULTS Overall, the patients found the symptom questionnaire and the self-care advice relevant and the application user friendly. The alert system was activated on several occasions when the symptoms were severe leading to a nurse contact and support so the patients felt safe and well cared for. CONCLUSIONS The platform enabled increased patient involvement and facilitated symptom assessment and communication between the patient and the health care provider. The studys results support further development of the platform, as well as tests in full-scale studies and in other populations.

Quality of Life in Spite of an Unpredictable Future: The Next of Kin of Patients With Multiple Sclerosis

The aim of the study was to describe the quality of life of the next of kin of patients diagnosed as having multiple sclerosis (MS). Forty-four next of kin were interviewed and thereafter answered the Subjective Quality of Life questionnaire. The next of kins quality of life emerged as good in terms of both external conditions and interpersonal relationships in both the interviews and the Subjective Quality of Life. In the interviews, most of the next of kin indicated a trusting and secure relationship with the cohabiting partner, but others described a strained situation with an unsatisfactory married/cohabiting life. There was worry about a worsening of the relationship in the future. In addition, the next of kin spoke of a decrease in freedom, self-actualization, and security, also of a more negative general mood and negative emotional experiences. The results of the questionnaire showed that a sense of engagement in life, having energy, self-actualization, self-assuredness, self-acceptance, security, and general mood were significantly correlated with quality of life as a whole. The study confirms that MS is a disease affecting the whole family, and the next of kin were living in uncertainty, facing an unpredictable future. The nurses could start family support groups and help the next of kin to look after their own health, giving advice on health-promoting behavior to make it possible for the person with MS to live at home even if the illness becomes worse.