Home-Based Treatment with Immunoglobulins: an Evaluation from the Perspective of Patients and Healthcare Professionals.

PURPOSE: This study aims to evaluate home-based treatment with immunoglobulin (IgG) by assessing and comparing the experiences and perceived value of patients and healthcare professionals, and potential differences in experiences between subcutaneous (SCIg) and intravenous (IVIg) modes of administration. As choices on the location and type of treatment are determined in a shared decision-making process, we evaluated the home-based treatment from the perspectives of both patients and professionals. METHODS: A questionnaire study was conducted among 205 patients, 44 informal caregivers, 43 hospital professionals, and 21 nurses of the Sanquin Home Service (SHS) that provides home treatment with immunoglobulins in the Netherlands. Experiences, perceived benefits, and effects on the patients' quality of life and overall ratings were assessed. RESULTS: Both patients and professionals were predominantly positive about the home treatment, irrespective of the administration mode. The home-based treatment with Ig contributed to the patients' autonomy, participation, and perceived health. Patients and informal caregivers valued the treatment with a global rating of 8.84, and professionals with 8.32 (on a scale from 0 "worst" to 10 "best possible care"). SCIg and IVIg patient groups differed in their experiences regarding the accessibility and communication of the home treatment service. Furthermore, hospital professionals reported lower effects on quality of life than patients themselves. CONCLUSIONS: Home-based treatment with immunoglobulins is highly valued because of its personalized and effective character, meeting the needs and preferences of patients. Nonetheless, patients and professionals do have different perspectives on the value of this type of care.

Measuring patient outcomes in chronic heart failure: psychometric properties of the Care-Related Quality of Life survey for Chronic Heart Failure (CaReQoL CHF).

BACKGROUND: The Care-Related Quality of Life survey for Chronic Heart Failure (CaReQoL CHF) is a newly developed patient-reported outcome measure (PROM) that measures care-related quality of life in patients diagnosed with chronic heart failure. This study describes the psychometric properties of the questionnaire and its relationship with disease severity and global rating of quality of care. METHOD: Insurance companies selected patients with a recorded diagnosis of chronic heart failure and for whom the hospital submitted a billing statement in the last year. Exploratory factor analysis, Cronbach's alpha and item-rest correlation were used to construct the CaReQoL CHF. Construct validity was assessed by examining the mean values of the CaReQoL CHF scales for the categories of the widely-used New York Heart Association (NYHA) functional classification and by correlating the global rating of quality of care with the CaReQoL CHF scales. RESULTS: One thousand eighteen patients with chronic heart failure filled out the CaReQoL CHF (RR: 35.7%). The CaReQoL CHF consists of 20 items and three scales: social and emotional problems, physical limitations, and being in safe hands. The mean scores of the three scales differed significantly for the NYHA categories, particularly for the social-emotional problems and physical limitation scales. The 'being in safe hands' scale showed a moderate positive correlation with the global rating of quality of care. CONCLUSIONS: The CaReQoL CHF is a concise and valid PROM that matches patients' priorities in healthcare. It adds a new element to existing quality of life questionnaires for patients with chronic heart failure, that is 'being in safe hands' scale. This scale is relevant for patients because they experience anxiety and tension about their condition. Future research should determine whether the CaReQoL CHF can help healthcare providers in daily practice to focus treatment on outcomes of care that are relevant to individual patients.