Concordance and Determinants of Patient and Caregiver Satisfaction with Care in Hematopoietic Stem Cell Transplantation Short Running Title: Patient and Caregiver Satisfaction with Care in HSCT

When a person faces a life-threatening blood cancer or a severe immune disorder, doctors may recommend a procedure called a hematopoietic stem cell transplant. This treatment involves clearing out the patient's diseased blood-making system with powerful chemotherapy and then replacing it with healthy stem cells. It is a grueling journey that often requires the patient to stay in a hospital for weeks, sometimes in a special room where they are isolated to protect them from infection while their new immune system grows. Because the process is so physically demanding and emotionally taxing, it rarely happens in a vacuum. A family member, a partner, or a close friend usually stays by the patient's side, acting as a primary caregiver. This person helps manage the patient's daily needs, offers emotional support, and communicates with the medical team. While the patient is the one receiving the medical treatment, the caregiver is the one living through the experience alongside them, facing their own unique set of stresses and expectations.

Understanding how well this medical care is working requires more than just checking if the patient survives. It also involves asking how satisfied everyone feels with the care they received. Satisfaction is not just a feeling of happiness; in a medical setting, it is a measure of whether the care matched what the patient and their family expected. It covers everything from how clearly doctors explained the treatment to how well the hospital staff listened to concerns and included the family in decisions. For years, researchers have focused mostly on the patient's point of view. However, because the caregiver is so deeply involved, their perspective matters just as much. If the patient feels well cared for but the caregiver feels ignored or overwhelmed, the overall experience of the treatment is incomplete. This gap in understanding is what a team of researchers at the All India Institute of Medical Sciences set out to explore. They wanted to see if patients and their caregivers see the same picture of the care they received, and to find out what specific factors make one group happier or unhappier than the other.

To find the answers, the researchers gathered a group of sixty-two pairs of patients and their primary caregivers who were undergoing this transplant procedure. They asked each person to fill out a separate questionnaire about their experience. The patients answered a sixteen-question survey, while the caregivers answered a ten-question version. These questions covered specific aspects of the hospital stay, such as how available the doctors were, how well the staff coordinated the different parts of the treatment, and whether the family felt included in making decisions about the patient's care. The researchers then compared the answers from each pair to see how closely their views matched. They also looked at personal details like age, gender, education, and the specific medical condition of the patient to see if these factors influenced how satisfied people felt.

The results revealed a clear difference in how the two groups experienced the same hospital stay. On average, the patients reported being quite satisfied with their care, giving high marks to the medical team. The caregivers, however, were less satisfied overall. While the two groups generally agreed on many aspects of the treatment, showing a moderate level of alignment in their views, there were specific areas where their experiences diverged significantly. The caregivers were notably less happy with how the hospital coordinated the different parts of the care, how much they were included in treatment decisions, and how well the staff followed up on test results. In these specific areas, the patients felt the care was good, but the caregivers felt there was a gap between what was promised and what was delivered.

The study also uncovered that different things influenced the satisfaction levels of patients compared to caregivers. For the patients, being female was linked to lower satisfaction, while having a higher level of education or being employed was linked to higher satisfaction. The physical condition of the patient also mattered; those who suffered from a painful side effect called oral mucositis, which causes sores in the mouth and throat, reported lower satisfaction. For the caregivers, the factors were slightly different. Gender was a significant factor in caregiver satisfaction, alongside higher education, employment, and being the spouse of the patient. However, if the patient had severe oral mucositis, the caregiver's satisfaction dropped. This suggests that the physical pain and communication difficulties caused by mouth sores create a burden that affects the entire family unit, not just the person in the hospital bed.

The researchers concluded that while patients and caregivers often share a similar view of the care they receive, they are not seeing the exact same thing. The caregivers are more likely to notice problems with communication and decision-making that the patients might miss or feel less affected by. This finding suggests that hospitals cannot simply assume that if the patient is happy, the family is too. To improve the experience for everyone, medical teams need to actively listen to the caregivers, ensure they are part of the decision-making process, and provide clear, consistent information about the treatment plan. By addressing the specific needs of both the patient and the person supporting them, healthcare providers can create a more supportive environment that helps everyone navigate the difficult journey of a stem cell transplant.