To Örebro University

Background: Chemotherapy, an established treatment for hematopoietic diseases. Common side-effects are nausea, infection, diarrhea, fatigue, and mucositis. Stem cell transplantation (SCT) often requires long hospitalization. Today it is common to treat patients in an outpatient care (OP care) combined with visits at the clinic.

In many countries, OP care is still an offer and not standard treatment. We aimed to investigate to what extent patients undergoing autologous SCT, received OP care or care at hospital, inpatient care (IP), and to explore patients’ subjective experiences of OP- and IP care during SCT. Investigate quality of care and strengthen OP care for patients’ sense of security and safety. Despite international experience of OP treatment at SCT, many patients are still fully cared for in hospitals. Person centered care can improve the care experience and alleviate the impact of difficulties during the transplant period.

Methods: A mini review with mixed method.

1. Quantitative, retrospective, descriptive design. A review from medical and nursing records of 88 adult patients who underwent autologous SCT in 2013-2014 and treated at a University Hospital in Sweden.

2. A quantitative questionnaire study with pre-selected response alternatives and open-ended questions. Sixtyfour patients were asked to participate in the study and chose to participate between 2017 and 2019.

3. A qualitative, pragmatic, comparative design. Data is a secondary part of a larger project (2) evaluating patient experience of safety and security in care during hematopoietic SCT regardless of inpatient or outpatient care.

Results:

1. Thirty-nine patients were cared for outside hospital at home/home-like environment (OP) and 28 were readmitted to hospital. Forty-nine were cared for at hospital. The main reason for readmission to hospital was related to nausea/vomiting, oral mucositis or stomach problems. No patients treated at OP care the entire post-transplant period (n = 11) needed total parenteral nutrition (TPN) in contrast to patients readmitted to hospital (n = 28) where 7 patients needed TPN. Seventeen patients in IP care during the entirepost- transplant period (n = 49), needed TPN.

2. Most patients, regardless of OP or IP care, felt satisfied with information given by care providers. Nearly all patients who were cared for IP and responded to the questionnaire, experienced anxiety during the care period compared with patients who were cared for in OP care, where the vast majority did not experience anxiety during care period.

3. Three themes emerged from the analysed data: subjectively perceived positive information and support; subjectively perceived negative information and support; subjective desired increased possibility of person-centered care.

Conclusions:

1. Staying at home during the transplant period led to less total parenteral nutrition.

2. Most patients indicate, as shown in other studies, satisfaction with care and information received in connection with hematopoietic SCT. Patients in IP care felt more anxiety than patients in OP care.

3. To be able to achieve optimal PCC, there was a request for developed IT support. The results can be of value when designing new functional tools to support person-centered care in the care of patients undergoing hematopoietic SCT or cared for in the hematology department.