Att genomgå stamcellstransplantation : patienters uppfattning om och faktorer av betydelse för symptom, funktionellt status och hälsorelaterad livskvalitet

Stem-cell transplantation (SCT) is one therapy alternative in cases of malignant 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 overall aim of this thesis was to ask for and describe the symptoms adult patients' undergoing SCT experience and how intense and distressing these symptoms are perceived before, during and after SCT. Furthermore the aim was also to describe functional status (FS), health-related quality of life (HRQOL) and general health (GH) from admission to one year post-SCT and to identify medical, demographic and/or patient reported outcome variables associated with patient-perceived GH. A total of 51 patients was consecutively recruited from the department of haematology at Huddinge University Hospital.

The majority of the patients suffered from acute or chronic leukaemia, multiple myeloma and 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 Healthrelated Quality of Life Questionnaire (SWED-QUAL). The patients answered the questionnaires at nine time-points, from admission to one year post-SCT. A majority of the patients (92%) reported one or more ongoing symptoms already on admission and at this timepoint the symptom manifestation was related to the malignancy the patient was suffering from.

From the day of the stem-cell infusion and up to approximately 10 days after the transplantation, between 33% 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 this period. Also nausea, sleeping problems, diarrhoea and changes of taste were reported by >50% of the patients during the protectivecare period. Vomiting, reduced mobility and fever are examples of symptoms that, once they occurred, were perceived as distressing. Overall, during the hospital stay, 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 I HRQOL and that they especially had an impact on physical performances. Patients who on admission reported anxiety experienced less symptom distress at the end of the protective-care period and at discharge, as compared with patients reporting no anxiety on admission. The patients' FS and GH improved over time from discharge to one year post-SCT. About one-third of the patients suffered from reduced FS, poor GH and a number of simultaneously occurring symptoms to handle on a daily basis one year post-SCT. The regression analyses identified 'number of simultaneously occurring symptoms' as associated with poor GH at discharge from the hospital and at one year post-SCT.

To actively and systematically measure, follow and document patients' self-reported symptoms, FS, 1 HRQOL and GH and to encourage and facilitate evidence based strategies for alleviation and management of symptoms are some of the most important tasks for the nurse and the other members of the SCT-team in order to alleviate distressing symptoms and contribute to a better health and life situation for individuals undergoing SCT.

List of scientific papers

I. Larsen J, Gardulf A, Nordstrom G, Bjorkstrand B, Ljungman P (1996). Health-related quality of life in women with breast cancer undergoing autologous stem-cell transplantation. Cancer Nurs. 19(5): 368-75.
https://pubmed.ncbi.nlm.nih.gov/8885485

II. Larsen J, Nordstrom G, Bjorkstrand B, Ljungman P, Gardulf A (2003). Symptom distress, functional status and health-related quality of life before high-dose chemotherapy with stem-cell transplantation. Eur J Cancer Care (Engl). 12(1): 71-80.
https://pubmed.ncbi.nlm.nih.gov/12641559

III. Larsen J, Nordstrom G, Ljungman P, Gardulf A (2004). Symptom occurrence, symptom intensity, and symptom distress in patients undergoing high-dose chemotherapy with stem-cell transplantation. Cancer Nurs. 27(1): 55-64.
https://pubmed.ncbi.nlm.nih.gov/15108952

IV. Larsen J, Nordström G, Ljungman P, Gadulf A (2006). Factors associated with poor general health after stem-cell transplantation. [Submitted]