3.5 Impact of PAH on caregivers
About 40.4% of the caregivers were female (average age, 41.8 years). The caregivers were mainly family members of patients, but the patients and caregivers in this survey were not coming from the same family.
Most caregivers thought the impact on their daily lives was severe, including household chores or errands (86.8%), leading to the following statement: “I am more organized/take on planning of his or her daily life/involved in tasks that my relative used to manage.” (Table 2). About 74% of PAH caregivers acknowledged impacts on working abilities postdiagnosis, with 31.6% indicating partially affected and 42.1% indicating “yes, totally affected” (Fig. 1).
3.6 Significant impact on daily emotions
Moreover, 85.0% of caregivers found it difficult to express themselves effectively, while 81.7% of caregivers reported a lack of understanding of PAH from the patient and their social group (Fig. 2).
During the interview, the most frequent concern from caregivers was what the future holds for their relatives (96.4%) as common thought was that PAH patients have a dim future. Meanwhile, 87.7% of caregivers felt stressed caring for their relatives and trying to meet other family or work responsibilities. However, not all caregivers demonstrated enough patience or empathy for the patients. Most caregivers felt their relatives asked for more help than they need or were overly dependent on them (76.8%). The similar proportion felt that because of the time they spent with their relatives, the caregivers did not have enough time for themselves. However, some caregivers got the different feeling, saying “I think I should be doing more for my relative” (67.9%). More than half felt their health suffered because of caring for their relative (58.9%). Unfortunately, negative emotions were not rare (Table 4).
3.7 Informational needs
The following information was requested by >95% of caregivers and patients: information on PAH specialists and doctors for caregivers (98.2%) and for patients (96.5%). Most patients would like testimonials and patient stories (98.2%) (Fig. 3).
Disease status including symptoms and prognosis was a common concern (98.2%, caregivers; 95.6%, patients). Caregivers expressed the need for more information on treatment options (98.1%) and administrative consequences of the disease and follow-up appointments including schedules and purposes (96.4%), which were closely related to their relatives’ status.
In addition, PAH caregivers (98.2%) and patients (96.5%) would like patient organization contacts to obtain support (Fig. 3).
3.8 Impacts on relationships postdiagnosis
Many caregivers (84.2%) reported a reduction in intimacy and decreased sexual relations since their spouse became ill that declined further as PAH progressed. This investigation paid more attention to the impact on caregivers than that of previous studies, to our knowledge. Questions related to the impact on sexual relationships were investigated only among caregivers. Thirty percent of caregivers acknowledged the impact on their sex lives and the reasons for the reduction in sexual relations and change in level of intimacy were as follows (Fig. 4).
3.9 Financial burden
Patients from low-income families paid the most attention to or were frustrated by the impact of PAH on their finances. PAH imposed a heavy financial burden on families with PAH patients. The working ability of caregivers and patients was influenced. Naturally, the loss of the ability to work because of PAH had a significant influence on their household income.
This study revealed that 71% of patients’ families earn less than 5000 yuan/mo, while treatments cost them 3990 yuan/mo on average. Our investigation found that 38% of patients paid over 5000 yuan/mo for treatments. Because of the financial burden, over 50% of patients did not use any kind of PAH-specific therapies (Fig. 5).
During the interviews, we conducted an evaluation to assess the level of financial impact and found that it was more than we expected. The evaluation score ranged from 0 to 10 (0, no impact; 10, extreme impact), and 65% of the patients and 66.7% of the caregivers had a financial burden score of 10.
PAH affects all aspects of patient life including daily activities, work, emotions, interpersonal relationships, etc. This research for the first time studied the impact of PAH on Chinese patients and their caregivers. In our survey, once diagnosed with PAH, most patients indicated that the most impacted aspect was their work, with diminished work abilities, which directly increased financial burdens. This study also showed that treatment expenses imposed a massive financial burden on families, while patients’ physical capabilities were seriously impaired.
More than 90% patients mentioned difficulties in daily physical activities. The European survey reported that 56% of the patients indicated that PAH had a very significant impact on their daily lives. Almost all of PAH caregivers and patients from our survey would like to get information on patient organization contacts. The patients in Guillevin's study look toward patient organization for information support and emotional needs. This might indicate that there were not enough patient organizations in China or if there were, our patients had not found the access to contact them.
The vague and nonspecific symptoms of PAH including fatigue, shortness of breath, palpitations, lower limb oedema and syncope combined with a time-consuming diagnosis could result in emotional problems. All the above symptoms cause physical disability. Previous studies suggested diminished physical health and health-related quality of life (HRQOL) and a high prevalence of depression and anxiety in PAH patients.[12–14] Emotional problems naturally arise during PAH progression. A lack of public understanding regarding PAH contributes to social isolation. The variable presence of PAH symptoms, particularly dyspnoea and fatigue, impact patients’ life quality.[8,15,16] In our investigation, we had studied a Chinese population with similar concerns and disease burden. The majority of patients had feelings of isolation and difficulties communicating with others. The fact that this disease is not “visible” contributes to a lack of understanding of the disease by others. Unfortunately, there is frequent confusion with simple hypertension. Their community showed less compassion toward PAH as a result of lacking knowledge on the disease. Thus, participants complained about the lack of understanding of PAH in their community, including their spouse, children, or grandchildren. The feelings of isolation contributed to mental pressure. This effect initiated the involvement of caregivers and their families. The qualitative interviews by Guillevin et al revealed that more than half of their participants felt socially isolated resulting from a lack of understanding of PAH. However, their study also reported positive aspects, with most of caregivers believing that they contributed to the patient's QOL and nearly two-thirds felt that their care enabled them to have closer relationships as a couple or family that was rarely seen with our participants.
In this study, patients would like to get information regarding testimonials and patient stories. An international self-reported survey using market research methodologies was conducted in the United Kingdom, and a modified survey was also completed in the United States. American patients requested more information regarding the financial consequences of their disease, while European patients requested more information regarding specialists and doctors.[8,17] Chinese patients were more likely to talk about the impacts of PAH on their lives with their family and friends, followed by patient organizations, PAH specialists, other PAH patients, etc. Similarly, more American patients found support from their friends, patient organizations, family doctor, nurse and spiritual or religious organizations. More Chinese patients regarded their family as the first place to talk about themselves, while less than a quarter of American patients reported that their family provided the most effective support and less than half of European patients thought their family provided the most effective support. Still, American patients tend to adopt a flexible attitude and maintain a positive self-image.
The relationship between patients and other family members changed subtly when the patients became ill. Both had to work harder expressing their thoughts and needs, leading to subsequent stress. Caring for patients and working exerted a heavy burden on their caregivers and the entire family. In the European survey, caregivers thought caring for a PAH patient was physically exhausting, and 57% of caregivers indicated that PAH had a profound effect on day-to-day life, often resulting in exhaustion because of the additional tasks and responsibilities. In our study, a high proportion of the caregivers admitted that they were often exhausted because of caring for the patients.
Chinese caregivers most likely discussed their problems with family and friends and PAH specialists in the second place. American caregivers would likely seek physicians, support groups, or other patients; 69% of European caregivers were more satisfied with those close to them or family, as compared with American caregivers. Caregivers had great responsibilities such as errands, household chores, and financial problems. Chinese caregivers were more likely than European and American caregivers to report that their relative's PAH had a significant impact on their lives; meanwhile they reported more involvement in tasks that their relatives used to manage, such as household chores and errands, and had higher levels of exhaustion and organization.
Chinese caregivers were more likely to change their daily life or schedule their family life around the patients’ needs. A lack of understanding and the invisibility of the disease are common reasons why caregivers feel isolated in the US and China, but the biggest problem in China was difficulty communicating with others. Caregivers are indispensable for patients’ medical care and self-management. However, the level of social support caregivers obtain was low, and they lack information regarding help with caregiving. American caregivers reported they would like to receive regularly updated information on drugs used for PAH from healthcare professionals. Our study also found that Chinese caregivers expect to receive information regarding PAH treatment options or medications.
PAH imposed a heavy financial burden on families with PAH patients. Treatment for PAH, particularly drug therapy that seriously impacted their family finances. The working ability of caregivers and patients was influenced and resulted in a significant influence on their household income. If national health insurance or social security system could offer support, their stress would be alleviated, and they could benefit from long-term therapy.
The necessity for treatment and tremendous financial burden causes dilemmas for many families. The participant's work, life, and emotions were impacted to varying degrees. Patients from low income families were concerned more about their finances. Among all families who participated in the interview, many families had low monthly income and what was worse, most of their income was used on treatments, which aggravated their poverty. The European survey conducted by Guillevin et al revealed that 85% of patients reported that their work or employment was affected by PAH. Both patients (73%) and caregivers (35%) reported a major impact on family finances.
This Chinese PAH patient and caregiver survey provided details on the profound impact of PAH. The financial burdens imposed by PAH and its treatment caused stress. It is of vital significance for healthcare professionals to provide more support and information for PAH families. This survey considered all aspects of life for PAH patients and their caregivers and could provide guidance for the future management of PAH.
The authors thank all the PAH patients and caregivers who took part in the survey and the patient associations for their valuable input into the planning and recruitment of the research. The authors also thank Shanghai Loudon Business Consultant Co and China PAH Patient Group ISEEK PH Hope Center, which assisted with the survey.
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caregivers; patients; pulmonary arterial hypertension; quality of life; survey
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