Study on the psychological needs of adults living with cystic fibrosis

‍The aim of the study was to assess the psychological support needs of adults with CF. Following the recommendations of the World Health Organization, we included in the study a clinical aspect about symptoms of depression and anxiety. In addition, we verified the links between the result of this research and the possibility of using psychological help as well as its presence in multidisciplinary clinics specializing in CF.

The participation rate in this study was 94%, which indicates that the sample, despite its small number, should fairly represent the state of the population targeted by the study (adults with CF in Ottawa). First, we can demonstrate that a prevalence of symptoms of depression and anxiety is present in the population studied. Thus, 40% of the sample population admitted to having experienced several symptoms similar to depression. This number is higher than in the general population (38%) and even higher than in another study where 29% of adults with CF had the same symptoms. Prevalence rates are higher among women than among men even though the proportion of men and women is balanced. The most important figure in the report is the percentage of those surveyed affected by symptoms of depression who reported that they used psychological help at least occasionally, which is 20%. So, accessing these services has surely helped people protect themselves against the amplification of these symptoms.

On the side of anxiety, 13% of people included in the research said they had symptoms related to it. This percentage is lower than in other more extensive research with people with CF.

On the other hand, this percentage is higher than that reported by another study including 153 adults with CF and that obtained by the general Canadian population on the GAD test. The differences in the numbers may be due to the methods used. In terms of the combination of anxiety and depression, it exists in the general population as well as in the population with CF and in Canada, it is comparable to rates in the world.

However, nearly 30% of people living with multiple symptoms of depression had never or very rarely consulted about these problems. This situation is not surprising and is even common in the general population. A study conducted in Australia shows that 75% of cancer patients who experienced symptoms of depression did not receive psychological support even if a specialist was part of the treatment team or support groups were organized. Two American studies have shown that the use of psychological support does not change the costs associated with the care required by patients in the health care environment compared to other services offered. Another study shows that many (64%) of university students who had problems with depression received no treatment even though they were covered by health insurance or if there was a short-term psychological assistance system in place at their educational institution. In addition, there is evidence that people with anxiety problems are less likely to seek help than people with mood disorders. These statistics tend to show that the problem of seeking psychological help is not restricted to people with CF or to the Canadian population only. If psychological support is offered by one of the specialists on the treatment team, its promotion should be done in parallel.

The majority of study participants who showed signs of depression and anxiety told us that they would be happy to find psychological help in their clinic and that they would use it. For those who had never felt the need, the situation is the same: the majority of them would use it if their situation changed. A study conducted by Oxley et all has shown that episodes of stress and difficulties experienced by people with CF are not necessarily detectable with normal measures of anxiety or depression. Study participants told us that they would be open to talking not only about their worries and moods with a specialist, but also about the life transitions, stresses, and changes in their lives that CF causes. A first recommendation would therefore be to establish an annual visit to a psychologist for each person with CF, which would help to target patients at risk of developing symptoms of depression and anxiety and would serve to give them priority in appointments. This recommendation does not go without taking into account the limitations that have been mentioned in some work in the health sector, i.e. limited time and personnel as well as the lack of qualified personnel to provide references and meet the demand for mental health. The high proportion of people interviewed in the study who do not have symptoms of anxiety or depression, but who would appreciate follow-up if needed, demonstrates the importance of focusing on prevention and support, as highlighted by epidemiological research on CF and Cystic Fibrosis Foundation (American Cystic Fibrosis Foundation). The annual visits recommended by these mental health guidelines could include stress management training, methods for achieving the resilience needed in certain life situations and illnesses, and to reduce feelings of distress, especially during surgical processes.

A high proportion of participants would likely meet with a psychologist if given the opportunity. This could reflect a need for inclusion in a given group.

However, the psychological support needs demonstrated in this study are part of more extensive research into treatment adherence or adherence to treatment.

Another explanation for the high proportion of participants who would likely meet with a psychologist if given the opportunity may be related to the performance of the Center for Epidemiologic Studies Depression Scale Revised and GAD-7 (seven questions on generalized anxiety disorders). Again, studies that use this diagnostic method are generally reliable and are often used in other CF research circumstances. Our work was done prior to the release of the CF epidemiological research guidelines and those of Cystic Fibrosis Foundation who recommend that patients use the Patient Health Questionnaire (PHQ-9) and GAD-7 to identify the symptoms of people with CF. These tools will undoubtedly help future research in this area. The patient health questionnaire in particular improves the quality of the diagnosis because 1) it is based on the Diagnostic and Statistical Manual of Mental Disorders IV 2) it is increasingly used in research on health system conditions 3) it is easy to use 4) its translation is available in several languages so that it can be used in all countries 5) it is much shorter than the CES-D with the same results on diagnostic and specific sensitivity and 6) it is more appropriate for research in the definition of change because it is easier to assess the response rate to a treatment.

Research on the effectiveness of psychological assistance interventions on patients with CF. There is no reason not to offer these services to all people with CF when they are beneficial for the rest of the population and especially for people with health problems. Having a mental health specialist on the treatment team and in the treatment process can also improve the quality of the team's services.

This study is the first to look at the psychological needs of adults with CF who attend a specialized and interdisciplinary clinic in Canada where there is a social worker but Or access to a psychologist is only offered in a private clinic only after referral. This type of clinic is present all over Canada.

In 2011, Cystic Fibrosis Canada has published a summary of the services offered at the 42 specialized CF clinics in Canada. In this document, the services offered by psychologists and those offered by psychiatrists are mentioned without regard to the major differences between the 2 specialists in human behavior. The statistics included in this document still show the status of access to psychological support services in specialized CF clinics. Only 16 of the 42 authorized clinics use the services of a psychologist/psychiatrist as part of the multidisciplinary team and the referral in private practice is made in 20 specialized clinics. In 3 of these 42 clinics, there is no specialist and no referral system.

In Europe, the inclusion of a psychologist in the treatment team has now been achieved. This means that some Canadian clinics do not meet international mental health criteria for people with CF.

First, waiting lists drag on like the time patients spend after registering (up to 12 months in some cases). The second disadvantage is that it is difficult to follow the journey of each patient, especially when psychological follow-ups are carried out by various external specialists. We already know the importance of an integrated approach in the care of people with chronic conditions. Another disadvantage is related to the financing of these visits because the method of reimbursement differs from one place to another in Canada.

Psychological assistance offered in CF clinics in hospital centers is covered by provincial health insurance while help through a referral is not. Most people with CF cannot afford the services of a specialist in private practice, or occupational health insurance, to cover these exorbitant costs (40% of

participants in our study were unemployed or disabled). The limited access to services offered in the health sector, but independent of CF clinics, and the incredible price of these services in private practice, were raised by the current government in 2004. On the other hand, there is no evidence that things have changed or are going to change. It also complicates the recovery process.

This study aims to demonstrate the psychological needs of adults with CF both in terms of prevention and treatment. Although a large number of specialized CF clinics in Canada use a specialist within the treatment team, the majority of them do not offer this service, which is essential for us. The patients in these clinics therefore receive treatment that does not meet global standards. Hence the importance of promoting multidisciplinary teams in specialized CF clinics and of necessarily integrating a mental health specialist into these teams.

Smita Pakhale, Justine Baron, Michael Armstrong, Michael Armstrong, Georgio Tasca, Ena Gaudet, Shawn Aaron, William Cameron, William Cameron, Louise Balfour
Ottawa Hospital Research Centre
Ottawa, ON

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