Health-related quality of life and physical functioning in patients participating in a rehabilitation programme, undergoing non-myeloablative allogeneic haematopoietic stem cell transplantation: Outcomes from a single arm longitudinal study.

OBJECTIVE: This study aims to report HRQOL, patient activation and physical functioning of haematological patients, participating in a 6-month multimodal interdisciplinary rehabilitation programme HAPPY, when undergoing non-myeloablative allogeneic haematopoietic stem cell transplantation (NMA-HSCT). METHODS: A prospective single-arm longitudinal design. Outcomes were collected as part of a feasibility study and included: HRQOL (EORTC QLQ-C30), patient activation measure (PAM), cardiorespiratory capacity (VO2peak ), leg extensor power, lean body mass, measured pre-NMA-HSCT at 3-, 6- and 12-month follow-up. RESULTS: Thirty (mean age (SD) 64.1 (6.5)) out of 34 patients participated and 18 completed HAPPY. Outcome measures showed large individual differences of decline and improvement during follow-up. Patients rated HRQOL as good (median 70.8; range 33.3-100). Fatigue, dyspnoea, insomnia and appetite loss mainly remained or worsened. PAM stayed in the upper half of range (median 55.6; range 20.5-84.8) with a trend towards improvement at 12-month follow-up. Physical functioning scores were low [i.e. baseline VO2peak , men median 1.5 L/min range (1.0-2.9), women 1.0 L/min (0.8-1.4), leg extensor power men 2.1 Watt/kg range (1.3-3.8), women 1.7 Watt/kg (1.3-2.4), lean body mass men 19.5% (17.6-24.9) and women 17.8% (15.3-21.7)]. CONCLUSION: The sustained low level of physical functioning and symptoms 12-month after NMA-HSCT emphasise the need for pre-rehabilitation and long-lasting rehabilitation support in this frail patient group.

Patients´ experiences and perspectives of challenges and needs related to nonmyeloablative stem cell transplantation: Involving patients in developing a targeted rehabilitation programme.

AIMS AND OBJECTIVES: To explore patients' experiences and perspectives of their challenges and needs regarding their return to everyday life after allogeneic nonmyeloablative haematopoietic stem cell transplantation (NMA-HSCT). BACKGROUND: NMA-HSCT can cure patients with malignant blood diseases, but during the following years, the majority of patients suffer from serious side effects and complications. Hence, it is a major challenge for patients treated with NMA-HSCT to rehabilitate, maintain physical and psychosocial functioning and return to a life in restored balance. DESIGN: The design was qualitative using the interpretive description methodology, and the theoretical framework symbolic interactionism inspired the interview guide and analysis. METHODS: Between April to May 2017, five focus group interviews were conducted with 15 outpatients in a haematological ward in Denmark. The patients were treated with NMA-HSCT 8-30 months prior to the interviews. The study adheres to the Consolidated Criteria for Reporting Qualitative Research guidelines. RESULTS: The impaired functioning was the overarching theme and seemed to be the trigger entailing rehabilitation needs related to the following main themes: realising decline, adapting to changes, the meaning of motivation and reliance on relations. These findings seemed to affect and influence the patients' struggle for a return to an everyday life like before being diagnosed or just before undergoing NMA-HSCT. CONCLUSION: This study adds to our understanding of important elements to consider when developing a targeted rehabilitation programme. RELEVANCE TO CLINICAL PRACTICE: Based on our findings, the rehabilitation programme should encompass: extensive variation regarding how to address the impaired functioning through individualised approaches, multimodal interventions, interventions through several months with varying intensity, an interdisciplinary team approach supporting motivation and visualisation of every progress by tangible goal setting, communication regarding hope and support, extended supportive care for patients living alone and finally increased adherence through social sessions with relatives and fellow patients.

A multimodal interdisciplinary rehabilitation programme (HAPPY) for patients undergoing allogeneic non-myeloablative haematopoietic stem cell transplantation: A feasibility study.

PURPOSE: To evaluate the feasibility of the multimodal interdisciplinary rehabilitation programme HAPPY, targeting patients with haematological malignancy and undergoing allogeneic non-myeloablative haematopoietic stem cell transplantation (NMA-HSCT). METHOD: A single arm longitudinal design was applied to test the feasibility of the 6-month HAPPY programme, which consisted of motivational interviewing dialogues, individual supervised physical exercise training, relaxation exercises, nutritional counselling, and home assignments. The feasibility measures included acceptability, fidelity, exposure, practicability, and safety. Descriptive statistics were conducted. RESULTS: From November 2018 to January 2020, thirty patients (mean age (SD) 64.1 (6.5)) were enrolled in HAPPY, of whom 18 patients completed the programme. Acceptance was 88%; attrition 40%; fidelity was 80%-100% for all HAPPY elements except phone calls; exposure of HAPPY elements at the hospital reflected individual differences but was acceptable, whereas exposure of HAPPY elements at home was low. Planning of HAPPY for the individual patient was time consuming, and patients were dependent of reminders and incites from the health care professionals. CONCLUSION: Most elements of the rehabilitation programme HAPPY were feasible. Yet, HAPPY will benefit from further development and simplifications before an effectiveness study can be conducted, especially regarding improvement of the intervention elements supporting patients at home.

Patients' reflections on undergoing non-myeloablative allogeneic haematopoietic stem cell transplantation and participating in a multimodal interdisciplinary rehabilitation programme: A qualitative study.

PURPOSE: To explore participants' experiences and perspectives on the relevance and meaning of participating in the multimodal interdisciplinary rehabilitation programme named 'HAPPY', and the programme's influence on their handling of everyday life during and after non-myeloablative allogeneic haematopoietic stem cell transplantation. METHOD: A qualitative interview study using Thorne's interpretive description methodology. A semi-structured interview guide and the analysis were inspired by symbolic interactionism. From April to July 2020, individual interviews were conducted with 24 patients who had participated in HAPPY while undergoing non-myeloablative haematopoietic stem cell transplantation. RESULTS: HAPPY contributed to the patients' knowledge building on the basis of three themes: Social Solidarity and Comparison, Processing Mind and Body, and Balancing Disease and Life. HAPPY supported the participants in maintaining their physical functioning and induced a perception of empowerment. Moreover, HAPPY supported patients in their efforts to familiarise themselves with their changed life conditions after the stem cell transplantation. CONCLUSION: Our findings showed that participation in HAPPY empowered patients to manage and cope with the stresses of everyday life and restore balance in their lives whilst undergoing treatment and confronting their cancer diagnosis. The findings underline the importance of elements of peer support and continuous support and facilitation from the specialist team, and the possibility to rethink the use of online technology to support and ensure a balance between disease and life and to minimise hospital visits.

Food caregivers influence on nutritional intake among admitted haematological cancer patients - a prospective study.

PURPOSE: Haematological cancer patients have an increased risk of undernourishment due to their malignancy, treatment toxicity and severe infections. This study examines whether kitchen assistants working as food caregivers increase nutritional intake and knowledge among haematological cancer patients. METHODS: Comparison of two cross-sectional studies with dietary assessment of patients with haematological malignancies before (N = 42) and after (N = 45) implementation of food caregivers. Secondly, a questionnaire concerning dietary counselling performed before (N = 74) and after (N = 78) the implementation. RESULTS: The energy requirements were fulfilled with 76.2% (CI 95% 64.6-87.9) and 93.3% (CI 95% 82.3-104.3) of the calculated need in the before-group and the after-group, respectively (p = 0.03). The improvement was mainly due to increased energy intake through between meal snacks served by the food caregivers. There was no difference in protein intake between the two groups. The study showed that more than two-thirds of the patients in both groups had side effects like fatigue, loss of appetite, vomiting, xerostomia or taste disorder to a degree that affected nutritional intake. When adjusted for side effects, patients in the after-group increased energy intake by 22% (CI 95% 6.1-38.0) (p = 0.007). After implementation of food caregivers significantly more patients stated that they were informed about their nutritional needs, 41% in the before-group and 67% in the after-group (p = 0.001). CONCLUSIONS: Educated and trained food caregivers working at the wards increase nutritional intake and knowledge among haematological cancer patients and play an important role in the multi professional nutritional management.