Perception of quality of life of persons with cystic fibrosis: a study on the adequacy of rating scales

Abstracts

INTRODUÇÃO: Avaliações de qualidade de vida (QV) na fibrose cística (FC) são tão importantes quanto a avaliação da condição clínica do paciente. Porém, há divergências sobre conceitos e teorias de QV. METODOLOGIA: Onze pacientes brasileiros com FC maiores de 18 anos responderam a perguntas sugeridas pela OMS para a exploração conceitual da QV. A pesquisa foi orientada pela abordagem da grounded theory, e os dados sofreram análise qualitativa. RESULTADOS: Apesar da diversidade de domínios valorizados pelos entrevistados estar de acordo com o caráter multidimensional da QV, há domínios ainda não presentes nas escalas. CONCLUSÕES: Nenhuma escala atualmente disponível abrange todos os aspectos valorados pelos pacientes, o que aponta para a importância de questões idiossincráticas e culturais para a QV na FC. O esclarecimento da relação entre saúde e QV ainda depende de pesquisas futuras.

Escalas de avaliação; fibrose cística; qualidade de vida; qualidade de vida relacionada à saúde

ORIGINAL ARTICLE

Perception of quality of life of persons with cystic fibrosis: a study on the adequacy of rating scales

Juliana Bredemeier^I; William Barbosa Gomes^II

^IPsychologist. Doctorate student in Psychiatry, Universidade Federal do Rio Grande do Sul (UFRGS), Porto Alegre, RS, Brazil

^IIAssociate professor, Graduate Program in Developmental Psychology, Instituto de Psicologia, UFRGS, Porto Alegre, RS, Brazil

^{Correspondence}

ABSTRACT

INTRODUCTION: Quality of life (QOL) assessment in cystic fibrosis is as important as the assessment of the patient's health status. However, there are controversies on QOL concepts and theories.

METHOD: Eleven Brazilian patients with cystic fibrosis, 18 years or older, answered questions suggested by the World Health Organization to explore the concept of QOL. The grounded theory approach provided the basis for this study and the data were qualitatively analyzed.

RESULTS: Although the diversity of domains valued by the participants is in agreement with the multidimensional nature of QOL, there are some domains missing in the scales.

CONCLUSIONS: No currently available scale comprises all aspects ranked as important by the patients. This underscores the importance of idiosyncratic and cultural aspects on QOL in cystic fibrosis. Clarifying the relationship between health and QOL still relies on further research.

Keywords: Rating scales, cystic fibrosis, quality of life, health–related quality of life.

Introduction

Cystic fibrosis (CF) is the most common systemic chronic disease of genetic origin in Caucasians, reaching ratios of 1:2,500 liveborns.¹ In Brazil, the numbers are not definite yet, with birth incidences ranging from 1:1,850 to 1:9,600.² It is estimated that approximately 10 million people in the world are asymptomatic carriers of this disease.³

Among the most severe consequences of CF are pancreatic insufficiency and progressive deterioration of pulmonary function.⁴ The disease presents varied symptoms, severity and progression.⁵ Treatment is complex, time–consuming and should be performed daily.⁶

Advances over the past decades in the treatment of CF have led to an increase in these patients' survival until adulthood, which has generated efforts to provide them the best possible well–being. In this sense, quality of life (QOL) assessments have proved to be important subsidies for the development of more sensitive and efficacious medical and psychological interventions, considering the patient's perspective.⁷ QOL assessments are important for treatment planning and follow–up, identification of predictive factors for QOL and development of strategies to promote well–being and prevent mental health.^8–13

Although there is no consensus on the definition of QOL yet,^14–17 it is accepted that subjectivity, multidimensionality and positive and negative feelings are basic elements of this construct.^18–20 For the World Health Organization Quality of Life Study Group (WHOQOL Group),²⁰ the concept is defined as "the individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, standards, and concerns".²¹

The development of QOL rating scales specific for CF was based on the fact that generic instruments and those related to health were not able to indicate variations in QOL due to disease severity.^8,10,11 For that reason, instruments have been developed to particularly assess the aspects affected by the occurrence of CF.^10,19,22

However, verifying that generic QOL rating scales are not sensitive to variations of CF severity could suggest that disease severity may not be the only neither the most important determiner of QOL. There are studies showing that the most successful people – or the healthiest – are not always those who reach the highest scores in QOL.¹⁹ In this sense, the argument is that instruments developed with sensitivity for this variation in severity may be calibrated to measure things other than QOL.^15,16 A study by Bowling¹⁸ on the aspects considered important by people for their QOL reinforces this possibility. The analysis of domains included in the most popular rating scales assessing health–related quality of life (HRQOL) revealed that certain domains pointed as important by participants were not included in the instruments.

Therefore, nowadays there is great care in performing population studies^8,9,19 – which involve exploring the experience, information, feelings and beliefs of the target population about QOL – before developing a rating scale. Once developed, the instrument can be translated and validated to new languages and cultures. Nevertheless, validating a scale raises a new problem – the crossculturality of the concept. It is known that the process of translation and validation does not guarantee that the construct of interest makes sense in the new culture.^23,24 In addition, even if investigations using the instrument do not present evidence for a cultural bias, it does not mean that there are no differences discriminating groups – it only means that the assessed cultural differences do not significantly affect the instrument's psychometric properties.²⁵

In CF, as far as we know, there are currently three published scales to measure QOL related to this disease, all of them developed based on literature review and surveying the opinion of experts and patients. In Brazil, the initial results of the translation and validation processes of the Cystic Fibrosis Questionnaire – Revised (CFQ–R)²⁷ have been recently published. However, there are practically no reports about studies on QOL in CF in our country.

Due to the importance of assessing QOL in the population of patients with CF, three main justifications are the foundation of this study: 1) absence of exploratory studies about QOL using patients with CF in Brazil; 2) importance of clarifying the concept of QOL in the surveyed population, before or during the development of rating scales; and 3) importance of considering the perception of respondents themselves about the assessment of their QOL.

The main objective of this study was to explore and understand the perspective of patients with CF about the aspects determining their QOL. Complementary objectives were: 1) to qualitatively understand how patients with CF perceive their relationship between disease and QOL; and 2) to define important domains to assess QOL in CF based on patients' perception. This study was part of a larger survey that aimed at exploring the experience of growing up and developing oneself with CF and the important aspects for these patients' QOL.

Methods

Participants

Eleven Brazilian patients, 18 years or older, were interviewed. They were recruited from two associations that support patients with CF in the state of Rio Grande do Sul (southern Brazil). The sample size of the general study was determined according to saturation and redundancy criteria.²⁸ Of the 13 patients contacted by telephone, one did not agree in participating and one did not come to the interview. Both patients invited by letter sent no response, which resulted in a participation rate of 73.33%. Sociodemographic characteristics and data concerning the participants' diagnosis can be seen in Table 1. All interviewees were receiving care at the same reference center for CF in Rio Grande do Sul. The interviews were carried out between August 2004 and February 2005.

Instruments

Guided interview

It comprehended four questions recommended by the World Health Organization (WHO)²⁹ to assess QOL (Table 2).

Questionnaire

Brief guided interview with sociodemographic and clinical questions, developed based on the sociodemographic items in CFQ–R.²⁷

Procedures

To control a possible influence of an unfavorable clinical status in QOL perception, none of the participants were interviewed during hospitalization. Those who lived in the capital city were interviewed in their homes; those who lived in other cities were interviewed at the researcher's office during a routine visit. All of them signed a consent form, in which they were granted permission to leave at any moment of the study.

The interviewees were encouraged to answer according to their experience, information, feelings and personal opinions. The interviews were always carried out by the same researcher (JB) and lasted between 45–90 minutes, being recorded and later fully transcribed. The interviewees were assured confidentiality, and the research was approved by the Ethics Committee of Universidade Federal do Rio Grande do Sul.

Analysis

Analysis of the interviews followed the assumptions of the grounded theory (GT).³⁰ This approach was chosen because it is a very useful method in issues about which there are few or no studies, since it allows identification of variables within complex behavioral problems.³¹ GT is considered an emergent theory, an analysis method and a guide for researchers to analyze their data.

According to GT, data collection and analysis are not only simultaneous, but also circular, which allows focus shifts as the data suggest this need. Such circularity – also called constant comparative method – promotes efficiency in the saturation criterion concerning the process of signaling that sufficient data have already been collected.³²A priori suspension of ideas, another GT resource, provides the theoretical sensitivity needed to extract perspective from interviews and ensures more validity to findings.^30,32

In this study, analysis presupposed (1) exhaustive reading of all interviews, which allowed the establishment of categories based on the interviewees' perspective; (2) reading and exploration of these categories to define statements that summarize initial descriptions; and (3) comparison of thematic units raised in the descriptions and items present in QOL rating scales. Review of the literature was present in all analysis stages, once again reflecting the circularity of this method. This is exactly why the findings will be presented here along with the discussion.

Results

The notion of QOL provided by the patients is in accordance with the multidimensional nature of the construct (Table 2). The concept exploration based on questions created according to WHO suggestions revealed the association of QOL with terms such as "feeling well," "well–being" and "happiness," as previously shown in the literature.²⁹ Health was one of the aspects considered important to have a good QOL, but the participant's assessment on their own QOL did not necessarily include description of symptoms. Effective references to symptoms primarily comprehended limitations resulting from pulmonary problems: "I can't breathe well," "I get tired even when climbing stairs," or "my lung is no longer as it used to be."

Among the aspects that were not mentioned, absence of references to spirituality stands out. Spirituality is associated with physical and mental well–being, and is currently considered a domain as important in determining QOL as the physical and psychological domains.³³ It should be stressed that the lack of references to spiritual issues does not mean that spirituality is not an important domain. Other aspects of equal importance may not have been mentioned either.

Perception of QOL was marked by the peculiarities of each interviewee. Some believe that "not having cystic fibrosis" is needed to have QOL. At the same time, some say they have good QOL in spite of CF, and can live better than those who do not have a chronic disease: "( ) I have lived [so far] much better than my mother and, however, I have fibrosis."

Due to the demands of CF, it is possible that the patient considers having had better QOL during childhood, when infections and limitations caused by the disease have lower incidence: "I was happier when I didn't have to worry about my health." On the other hand, patients diagnosed in adulthood recognize that the possibility of starting the treatment early, as well as the benefits resulting from it, could have provided better QOL in childhood.

The treatment the patient is supposed to perform has a paradoxical relationship with QOL. On the one hand, it can be perceived as harmful to QOL due to time and dedication required. On the other hand, it can be perceived as something that provides a good life: "Regarding the delay, you know, the time we waste, you know [performing the treatment] not actually waste, you know, because it is not wasted time, you know, it is time we gain, I'm getting more quality of life." The importance of performing the proper treatment has been recognized, but warning to the fact that sometimes the access to a treatment does not guarantee that it will be performed.

The support received by a partner, relatives, friends, teachers, classmates and workmates is an aspect that influences QOL. When the diagnosis is performed in adulthood, partners were the first to receive the news and offer support. Family union is something that helps facing the disease, due to both affection and help offered by relatives in performing the treatment. The opportunity of talking to other patients with CF – such as in waiting room groups – and the care provided by mental health professionals were also mentioned as support factors.

How patients face the disease is revealed in the expressed perception of QOL. The participants who considered that CF is a barrier to perform activities were also those who assessed themselves with poor QOL. Complementarily, those who mentioned that undergoing the treatment provides well–being and that it is possible to be happy despite the presence of a disease assessed themselves with good QOL.

Analysis of QOL rating scales in CF

Five QOL rating scales were analyzed: one generic instrument (WHOQOL–100),³⁴ one health–related instrument (Short Form–36³⁵ and three instruments related to CF: 1) Cystic Fibrosis Questionnaire – Revised,²⁷ American version of the Cystic Fibrosis Questionnaire (CFQ),²² originally published in French; 2) Cystic Fibrosis Quality of Life (CFQoL);⁹ and 3) Questions on Life Satisfaction – CF Module (FLZ^M–CF).¹⁹ The FLZ^M–CF presupposes a combined use of a generic module (FLZ^M General) and a health–related module (FLZ^M Health). This analysis is presented in Table 3.

Only the instruments WHOQOL–100 and SF–36 have versions published in Brazilian Portuguese.^34,36 For that reason, the three instruments related to CF were analyzed based on their English versions.

In Table 3, the items "access to health services and drugs" and "pollution and climate" are not present in any of the three instruments specific for CF. This finding stresses the possibility of major differences in the definition of QOL from the perspective of patients with CF in Brazil, compared with countries where the instruments were originally developed. Such differences probably result from cultural peculiarities. In fact, the importance of aspects such as "access to health care services" and "environment" for health has already been recorded, including in the Brazilian legislation, which also has food, basic sanitation, education, transportation, leisure, income, access to goods, work and housing, among others, as basic health determiners and conditioners.³⁷

The items "financial resources" and "housing" are only assessed in the module general satisfaction with life of the FLZ^M. "Education" is assessed in the CFQ–R, CFQoL and WHOQOL–100. Spontaneous mention to those aspects made by the interviewees is easily explained by Brazilian socioeconomic conditions, which are much different from the European or American situation, where the instruments were developed. Those five items ("access to health service and drugs," "pollution and climate," "financial resources," "housing" and "education"), which were not measured by the instrument related to CF (SF–36), are included in the WHOQOL–100.

Analysis of question and item formulation in those five questionnaires showed that CFQ–R, CFQoL and SF–36 greatly base their QOL measurement on the evaluation of the extent to which the patient's functional aspects are limited by the disease. On the other hand, WHOQOL–100 and FLZM use evaluations that consider the importance the respondent gives to each domain, which is in accordance with the subjective perspective of the QOL construct. The FLZ^M does that by presenting a section in which respondents should attribute the importance of each item in determining their QOL. For example, instead of asking how much time is spent on the treatment, or how often patients woke up at night due to cough over the past 2 weeks (items 16 and 46 of CFQ–R), the question is how important it is for patients to carry out daily therapy consistently and how important it is for them to be free of coughing (items A6 and 1 of FLZ^M–CF).^* Similarly to the FLZ^M–CF, the WHOQOL–100 presents several items aiming to obtain this evaluation of importance.

Comparison of items raised during the interviews with the items included in the instruments here analyzed revealed that the WHOQOL–100 is the scale that has the highest number of aspects affected by Brazilian socioeconomic conditions, present in Domain V (Environment). Note that the WHOQOL–100 has been developed based on the WHOQOL methodology, which presupposes the simultaneous performance of focal groups with individuals of different languages and cultures, previously to and concomitantly with the development of scales.^20,34 About this issue, there are many authors who argue that the process of translation and validation of a scale not always preserves its sensitivity for idiosyncratic characteristics of the new culture and language.^{23–25,38–41}

Frisby³⁰ stresses that even if investigations using the new instrument do not show evidence of cultural bias, this can be due to the fact that assessed cultural differences may not significantly affect the instrument's psychometric properties. By saying that, the author mentions the danger previously pointed by other authors^23–24 that wrong interpretations and conclusions are provided based on the presupposition that the original and adapted tests are equivalent.

All these concerns about the applicability of adapted instruments have led the International Test Commission (ITC) to develop a set of stages to assure the validity of construct and reliability of the adapted test.⁴² Among other aspects, these stages emphasize the need of assessing different groups before assuming the existence of equivalence of construct between cultures. Therefore, we understand that only the previous exploration of the concept, as well as the identification of cultural and language peculiarities, is able to reveal whether the best strategy to allow a comprehensive assessment of the construct in the new population is the translation and validation of the original instrument or the development of a new instrument.

Linguistic analysis of the five instruments also revealed major differences in question formulation and item development. These differences may generate important biases in QOL assessment. After all, if someone regularly invests 3 hours to carry out daily therapy, without considering this important for their QOL, questions such as "How many hours do you spend to carry out daily therapy?" are measuring aspects of this individual other than QOL. This indicates the need of being cautious about the conclusions drawn after verifying that generic instruments are not sensitive to variations in CF severity. It is possible that instruments deemed sensitive are gauged for this variation because they ask how many times over the past week the respondent had to woke up at night due to coughing (item 46, CFQ–R), instead of how important it is for this respondent to be free of breathing difficulties and coughing (item 1, FLZ^M–CF).

As to the health determining character in QOL, the three instruments related to CF analyzed herein assess HRQOL, which has already been defined as non dependent of income and housing.¹⁶ In opposition, the interviews carried out in this study revealed that housing, money, environment and access to health care and drugs are aspects considered important by patients. This suggests that assessment of QOL in CF may not be performed only in terms of aspects related to the disease.

Discussion

Exploration of the interviews showed that aspects such as (1) social support, (2) positive and negative feelings, (3) coping strategies, (4) future perspectives and (5) moment of diagnosis are related to QOL in CF. The four first aspects have been pointed by other studies as important for QOL in other diseases.⁴³ In spite of that, there seems not to be any research relating those aspects and QOL in CF. As to moment of diagnosis, we are not aware of any research so far investigating the relationship of this aspect with QOL in any population.

Another relevant finding was that, according to the patients' perspective, QOL is not necessarily related to the presence of CF. It was already known that the healthiest people do not always present the best QOL.¹⁹ According to interview data, there are people with CF who believe they have lived so far a much better life than other people without this disease, which indicates that CF not always determined a person's satisfaction with life. In addition, we verified that it is possible that patients who consider themselves with a poor clinical status assess their QOL as good or very good. In this sense, studies have pointed that depression may play a major mediating role in the patients' assessment about their QOL, which perhaps explains these perceptual differences.⁴⁴ However, we cannot state that QOL in CF is not related to the presence of this disease, since there are patients for whom well–being seems to be directly dependent on health and functional aspects limited by CF.

Analysis of the five scales revealed that none of them comprises all aspects ranked as important by the patients concerning their QOL. The WHOQOL–100, which had a simultaneous and multi–centered development, was the scale that included the highest number of domains raised in the interviews with the participants of this study. However, a limitation of this instrument is not measuring the burden of functional impairment specifically caused by CF. On the other hand, the other four instruments failed in assessing more environmental aspects of the respondents' lives. Only the WHOQOL–100 and the FLZ^M contemplate the importance of the respondent's individual evaluation of each assessed domain.

Having said that, our opinion is that the medical saying "each case is a case" can be applied to the subjective definition of QOL. In Brazil, access to health services and drugs can be difficult and occasionally impracticable for low–income families. The reports of our interviewees indicated that the peculiarity of the Brazilian socioeconomic reality influences the experience of having CF, making it different from the experience of a person born in a developed country. For that reason, we consider that cultural, socioeconomic and individual issues that influence QOL – such as access to drugs, included in the WHOQOL–100, but absent in all instruments related to CF – should be explored, identified and included in rating scales.

Final considerations

As implication for clinical practice, our data point to the importance of not losing the sense of individualization in medical care in its biomedical and psychosocial developments, which was already stressed by authors such as Engel⁴⁵ decades ago. The different individual perspectives found concerning QOL point to the need of changing from the notion of offering basic health to the notion of offering full health care, focusing on the importance of a multiprofessional and individualized health care. We also suggest investigations on the personality and perception of QOL, whose interaction has already been pointed in the literature,⁴⁶ and emphasize the importance of investigations that cross objective data of clinical status – pulmonary function tests and body mass indexes, for example – with subjective data when assessing QOL in CF.

Based on our conclusions about the analysis of instruments, we make the following suggestions for research and use of instruments to assess QOL:

1) that the exploration of the concept of QOL in people with CF, as well as consultation to experts and local literature, should be part of the process of deciding between the translation and validation of a previously existing instrument or the development of a new scale;

2) that the choice for translating and validating is only made when exploratory investigations indicate an equivalence of concept in the source and target cultures;

3) that preference is given to the use of scales that consider the importance of the subjective character of QOL, contemplating this aspect in the choice of items and questions and in the linguistic style;

4) that assessment of QOL in CF, due to the lack of consensus observed even in the interviewees of this study about the role of health in determining QOL, is performed with conceptual and theoretical clarity about the aspects determining QOL for the target population, and that the theoretical model for each instrument is always registered in the investigation reports;

5) that further investigations attempt to establish whether the concept of HRQOL is a construct with an effect on the patients' lives or only an operational definition used to explain the focus on symptomatic and functional aspects of QOL instruments developed based on this perspective; and

6) that assessment of QOL is seen as a diagnostic process, in which stages such as interview and counseling are as important as the application of a rating scale.

This study used a qualitative approach of investigation, which does not allow generalization of its results for other populations or cultures. The data were obtained from a particular sample selected by convenience and receiving care at the same place. Even so, the findings of this investigation should be considered with the same importance given to results of studies carried out with expressive number of participants. According to Brandão,⁴⁷ the individual's speech is actually a sample of representations of a historical time and social milieu. Therefore, statements such as "I live very well despite the disease" do not necessarily refer to individual histories, and may reflect the history of many other patients affected by CF.

We conclude by saying that the opinions expressed herein may reflect the opinion of many other patients; they can be transferred or extrapolated to other realities and deserve attention in further investigations.

References

Received July 20, 2006.

Accepted March 1, 2007.

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*

CFQ–R 14+, item 16: "How much time do you currently spend each day on your therapy?"

CFQ–R 14+ item 46: "How often during the past two weeks have you woken up during the night because you were coughing?"

FLZM–CF, item A6: "How important is it for you to carry out daily therapy consistently?"

FLZM–CF, item 1: "How important is it for you to be free of breathing difficulties / coughing?"

Publication Dates

• Publication in this collection
  06 Sept 2007
• Date of issue
  Apr 2007

History

• Received
  20 July 2006
• Accepted
  01 Mar 2007