Att genomgå stamcellstransplantation/Undergoing stem-cell transplantation : Patienters uppfattning om symtom, funktionellt status och hälsorelaterad livskvalitet/Patients perceptions of symptoms, functional status and health-related quality of life

Abstract: Stem-cell transplantation (SCT) is one therapy alternative in cases of cancer diseases. The SCT process begins with a course of high-dose chemotherapy with or without irradiation, which results in side- effects that can range from minimal to life-threatening. The symptoms occurring from the conditioning regimen are well known, but the patients' experiences of them have been only minimally studied. The main aim. of this thesis was to investigate adult patients' experiences of symptom occurrence, symptom intensity and symptom distress before, during and after SCT. Furthermore, the aim was also to investigate the patients' functional status (FS) and health-related quality of life (HRQOL) during the same period. A total of 51 patients was consecutively recruited from the haematology unit at Huddinge University Hospital. The majority of them suffered from acute leukaemia, chronic leukaemia, multiple myeloma or breast cancer. Three questionnaires were used to collect data: the Symptom, Frequency, Intensity and Distress Questionnaire for SCT (SFID-SCT), the Sickness Impact Profile (SIP) and the Swedish Health-related Quality of Life Questionnaire (SWED-QUAL). The questionnaires were answered on admission to the hospital (TO), the day before the start of the conditioning regimen (T l), the day of the stem-cell infusion (T2), the day when the protective-care period started, i.e. neutrophil count < 0.5 x 109/litre (T3), the mid-point of the protectivecare period (T4), the day when the protective-care period ended (T5), the day of discharge from the ward (T6) and 7-15 weeks after the SCT (T7). A majority of the patients (92%) reported one or more ongoing symptoms already on admission (TO) and at this time-point the symptom manifestation was related to the malignancy the patient was suffering from. From the day of the stem-cell infusion (T2) and up to approximately 10 days after the transplantation (T5), between 3 3 % and 54% of the patients reported > 10 simultaneous symptoms. Tiredness (81-91%), loss of appetite (88-93%) and mouth dryness (70-83%) were the most frequently reported symptoms during T2-T5. Also nausea, sleeping problems, diarrhoea and changes of taste were reported by >50% of the patients during the neutropenic period (T3-T5). Vomiting, reduced mobility and fever are examples of symptoms that, once they occurred, were perceived as distressing. Overall, during the hospital stay (TO-T6), the patients reported the occurring symptoms as quite or very intense at 1,036/2,251 (46%) occasions. The corresponding figure for symptom distress (quite or very distressing) was 51% (916/1,813 occasions). The patients reported that the occurring symptoms led to a worse HRQOL and that they especially had an impact on physical performances. Patients who on admission reported anxiety experienced less symptom distress at T6 and at discharge, as compared with patients not reporting anxiety on admission. This thesis illustrates the importance of a systematic approach by the nurse to assess the patients' own perceptions of occurring symptoms, functional status and health-related quality of life. Nurses and other members of the SCT team need to develop the nursing care to prevent or relieve SCT-related symptoms better.