Health-Related Perceptions of Older Adults/Patients with Degenerative Lumbar Diseases (ODLs) are associated with their Quality of Life: a Mixed-Methods Study

Introduction

Degenerative lumbar diseases are “essential illnesses” that are associated with poorer quality of life (QOL) in the elderly.^1,2 Many degenerative changes are found to be risk factors of their QOL, such as related changes in plain radiography, osteoporosis, muscle strength, and physical ability.³ Thus, surgery-related factors are emphasized in major biomedical reports as the key points of improving their QOL.^4,5 But social risk determinants, such as perceived social support and level of education,^6,7 have been proved as predictors of elderly patient’s QOL in some studies. Thus, this study was designed to examine the relationship of some social risk determinants and QOL of the older adults/patients with degenerative lumbar diseases (ODLs).

Generally, degenerative lumbar diseases are associated with severe pain and difficulties in activities of daily living.⁸ They often result in disability and even death for affected patients.⁹ Thus, increasing awareness regarding degenerative lumbar diseases and its effects on the QOL of ODLs has become necessary for current public healthcare systems.¹⁰ It is also desirable for patients to understand the relationship of their QOL (including regarding postoperative complications, pain, timed up and go, sit-to-stand, daily life, etc.) with some health-related perceptions, to foster health-promoting behaviours.¹¹

To date, there is limited information about these diseases. The primary prevention and treatment of degenerative lumbar diseases remain difficult. However, as a key part of the spine, the lumbar is essential for many activities. Thus, the patient’s QOL is greatly impacted by related diseases. Generally, with increasing age, the lumbar ages too.^12,13 Related symptoms, such as pain, numbness, sensory disturbance, and dyskinesia, can result in great difficulty for patients, especially older adults.

A few non-biomedical studies of pain, appetite, fatigue, and confidence reported that patients’ health-related perceptions might be an important indicator of their health-related behaviours and that these perceptions are associated with their QOL.^14–17 Many patients’ health information is influenced by related perceptions that are important for the way they feel in daily life. Patients’ QOL is impacted during their activities, emotional states, and important decision-making processes. For example, pain is one of the most common factors that trigger individuals, especially older adults, to perceive an illness and seek health services.¹⁸ Furthermore, fatigue is considered a health risk factor because it correlates with depression symptoms in patients, which in turn can affect their health-related QOL.¹⁷ Besides, low self-confidence or self-esteem are strongly associated with patients’ QOL.¹⁹ Race, genes, age, gender, and some unhealthy lifestyle or habits are also important factors associated with the QOL of patients with degenerative lumbar diseases.^20–22

Although the current body of evidence suggests an association between patients’ QOL and certain genetic or environmental factors, limited studies have focused on the relationship between ODLs’ health-related perceptions and their QOL. An understanding of the relationship between ODLs’ health-related perceptions and their QOL is meaningful. Thus, this study aimed to explore ODLs’ QOL across the domains of physiology, psychology, social relations, and environment, to determine related relationships.

Materials and Methods

Study Design

A mixed-methods study, combining both quantitative and qualitative processes, was designed. This was a two-stage process, conducted through a questionnaire survey and an in-depth interview (Figure 1). Participants in the first stage were recruited through convenience sampling and they completed the questionnaire either independently or with the help of researchers who interpreted the questions. Subsequently, based on the information provided by the participants, some ODLs from the first stage were selected and invited to participate in the in-depth interview in the second stage. Although these two stages were designed to overlap, the second stage started in the second half of the questionnaire survey period. Generally, with the ongoing questionnaire survey process, a trend was gradually identified in this study that “perceived life barriers”, “subjective health status”, and “corresponding treatment outcomes” showed some association with ODLs’ QOL. Further, this study designed the open questions and recruited related participants for the in-depth interviews (stage 2) during a later questionnaire survey process (stage 1). When the participants were obtained for interviews, stage 2 was initiated immediately. Meanwhile, new participants for stage 1 continued to be recruited.

Figure 1 Study design.

Inclusion Criteria

The inclusion criteria for the study participants were: patients aged ≥ 60 years; patients diagnosed with degenerative lumbar diseases including degenerative lumbar spinal stenosis, lumbar disc herniation, and degenerative lumbar spondylolisthesis using clinical and radiological evidence; those with low back pain history for over three months; those with no communication difficulties; and those willing to share information about their lives. All potential participants were briefed on the study aims before they decided to participate, and their consent was obtained.

Sampling of Participants

Sampling Process

Participants were recruited from the hospitalized patients receiving conservative treatments including physiotherapy and drug medications at the Department of Orthopaedic Surgery and “blinded for review” by the researchers through face-to-face communication (patients who received surgery were not included). Questionnaires with >20% questions unanswered were excluded. When less than two questions were unanswered in one of three domains (physiology, psychology, and environment), the missing scores were replaced by the average score of related domains. However, if more than two questions were unanswered in one domain, the score of the related domain was omitted (for the “social relations” field, only one question could be left unanswered). After excluding 14 questionnaires with missing data, 125 valid questionnaires were analysed from January 12, 2017 to June 27, 2018. Of the 125 participants, finally, 18 of them were invited and participated in in-depth interviews. Participants who were included in stage 2 were designated with an anonymized code.

Questionnaire Survey in Stage 1

The World Health Organization’s Quality of Life Instrument-Short Version (WHOQOL-BREF) is a simplified version of the WHO Quality of Life-100 (WHOQOL-100).²³ The comprehensiveness of the WHOQOL-100 is retained by the WHOQOL-BREF. At least one question in each domain related to QOL and the most general question in each domain (ie, the ones with the highest correlation with the total score) were included. The Chinese version of the WHOQOL-BREF, which was used in this study, has been used extensively for its excellent reliability and validity.^24,25

The WHOQOL-BREF comprises 26 questions, rated on a five-point Likert scale from 1 to 5 (the degree of positivity increased with the ratings from 1 to 5). The total scores were calculated for each domain, and higher scores indicated higher QOL.

Further, based on the results of literature analysis and two rounds of expert consultation (six scholars in related fields, as well as seven chief doctors of orthopedic departments of tertiary hospitals were involved), three other questions were added to this survey. Participants used a five-point scale to rate the themes on “life barriers”, “subjective health status”, and “treatment outcomes”. Barriers study is essential to supporting the QOL of patients.²⁶ As the result of expert consultation, also as reported in many studies, patients’ QOL is affected by various life barriers, including environment-related,^27,28 physical activity-related,²⁹ and other practical barriers.³⁰ QOL and health status are considered the most important aspects for patients. Self-perceived health status is empirically estimated as the way health to affect QOL.³¹ Treatment outcomes also showed a strong association with the QOL of the elderly³² Thus, three related questions were added to study their influence on ODLs’ QOL. As designed, lower scores indicated positive health-related perceptions (fewer barriers, feeling healthy, satisfied with treatment outcomes), while higher scores indicated negative feelings (several barriers, feeling unhealthy, unsatisfied with treatment outcomes). ODLs who rated the items “1”, “2”, or “3” were categorised into the “positive” group, while those who rated the items “4” or “5” were categorised into the “negative” group.

Data on participants’ demographic characteristics were also collected; these included age, gender, native place, address, education level, marital status, occupation, and living arrangements. The independent sample t-test using STATA 10.0 was performed to assess the factors associated with the QOL of ODLs.

In-Depth Interviews

As previously noted, a total of 18 participants were included in the in-depth interviews, and data were gathered until data saturation was reached. Each participant was briefed on the study aims before they decided to engage.

The grounded theory coding method was employed for the qualitative analysis in this study,^33–35 similar to our previous study.³⁶ By comparing, memo-writing, and immediate data analysis, themes were explicated and analysed from interviews until saturation was reached.³⁷ In this study, data saturation was defined as a point when data from participants no longer revealed new information on the existing theoretical categories extracted from related processes.³⁸ The length of the in-depth interviews was flexible, varying from 30 to 60 minutes.

Two open questions were asked: “What are your perceptions of your QOL?” and “What do you think have affected your QOL?” A series of relevant probe questions on “life barriers”, “health status”, and “treatment outcomes” were also included.

In principle, this study employed the combination coding method, including both line-by-line coding, and sentence-by-sentence coding. In some conditions, integrated coding for sentences or even paragraphs with similar or related meanings was allowed. Special consideration was given to some sensitive actions, events, and processes, especially the observed “vivid” words. Then, the abstract concepts in the conceptual level were extracted (codes). The codes were fixed, integrated, and even traded offs with the supplement of the follow-up material. After repeated deliberations and comparisons, the final codes were obtained. Subsequently, a series of initial codes and focused codes were generated. The relationship of ODLs’ health-related perceptions with their QOL was studied.

Results

A total of 125 valid questionnaires were collected from participants (Table 1), including 45 (36.0%) male and 80 (64.0%) female participants. Many of them had degenerative lumbar diseases for more than 10 years.

Table 1 Socio-Demographic Information of the Participants

ODLs’ QOL and Associated Factors

All ODLs were required to evaluate their related health status in the preceding two weeks. The mean QOL scores on the four domains were 11.02±2.44 for physiology, 13.09±2.16 for psychology, 14.66±2.59 for social relations, and 6.27±1.07 for environment.

ODLs’ QOL was significantly associated with their perceived “life barriers” (Table 2). ODLs with lower scores on “life barriers” also reported better QOL on physiology, psychology, and social domains than those with higher scores (p<0.05). But this association was not significant in the environment domain (p=0.051, p<0.10).

Table 2 Independent Sample t-Test Results of ODLSs’ QOL with Perceptions (95% Confidence Interval), Ntotal=125

Likewise, ODLs with higher scores on “subjective health status” reported a significantly worse QOL in physiology, psychology, and environment domains (p<0.05; Table 2). Meanwhile, those who reported lower scores on “treatment outcomes” showed significantly better QOL scores in all four domains (p<0.05) (Table 2).

Association of ODLs’ QOL with Perceived Factors

ODLs’ QOL was associated with perceived “life barriers”, “subjective health status”, and “treatment outcomes”.

Perceived “Life Barriers”

Identifying the main life barriers and their underlying mechanisms are important, which can affect patients’ perceptions of difficulties in daily life and in turn affect their QOL. The life barriers that were mentioned the most in this study were summarised as “physical pain/discomfort”, “inconvenience related to self-care/work/family-life”, “economic burden”, and “mental pressure”, among others.

Except for wasting money on medicine, extra help from others is needed when performing heavy labour work. Thus, it is difficult for me to take part in family outings because it is inconvenient. Such life barriers remind me that I am a useless person who always brings trouble to others. (97-11-L)

ODLs who reported more “life barriers” were more easily unmotivated about various aspects of their daily life, such as “daily activities”, “working”, “providing intergenerational support to their children”, and “interaction between friends”. There was a higher possibility of encountering difficulties in related processes. Such life barriers can result in mixed results that covered more than one of the four mentioned fields.

No mention about going out for work; even helping to take care of my granddaughter or serving myself was difficult. Though others never complain about my uselessness, I am unsatisfied with myself. (49-6-M)

My interactions with friends have been decreasing greatly since my degenerative lumbar disease worsened. (65-8-X)

Life barriers can impede ODLs’ ability to take care of themselves and others and increases their difficulties in interpersonal communication and environmental interactions, thus having a considerable negative effect on their QOL.

Perceived “Subjective Health Status”

ODLs’ “subjective health status” were associated with their subjective life experiences. The most mentioned subjective health status was about “pain”, “sleep”, “appetite”, “energy”, etc., which played an essential role in their perceptions of health. ODLs’ positive “subjective health status” was strongly associated with “lack of pain” and “good sleep/appetite/drinking/activities”, which represented being “full of energy”.

I am satisfied with how I feel about my health. I can eat and sleep well. They (children/spouse) are worried more than I am. I cannot wait to meet my good friends who had telephoned me and requested me to go fishing after my discharge. (107-12-B)

Compared with ODLs who reported positive “subjective health status”, those who reported negative feelings were more easily unmotivated with their daily lives. They reported more negative feelings, such as “lack of cure”, “discomfort”, “worry”, “fear”, and “confusion”. As a result, many negative behavioural reactions were reported, which included “being unmotivated about planning daily activities”, “being unmotivated about pursuing a higher QOL”, “less confidence in improving QOL”, etc. Thus, such ODLs had relatively poorer QOL.

My subjective health status is bad. I still feel pain and can’t sleep well, which make me very restless with anxiety for a long time. But I dare not always tell my children about my real feelings, because I am afraid to complain that I am having troubles. Thus, I simply hide my feelings and make as few requests as possible. Recently, I have been gradually reducing my daily activities and visiting fewer friends. (78-9-Q)

Perceived “Treatment Outcomes”

Degenerative lumbar diseases are irreversible in some ways. Thus, many patients have to live with such diseases for the rest of their lives, which results in negative perceptions of “treatment outcomes”. Several ODLs stated that their perceived “treatment outcomes” were not only based on their physicians’ evaluations but also their subjective perceptions. The latter refers to their own experience and feelings, which can influence their health-related decision-making in daily life, such as “health management”, “living arrangements”, and “expectation of future”. Many of these were closely associated with their QOL. ODLs who reported positive “treatment outcomes” also reported relatively better QOL.

I feel the treatment outcomes are OK. On the advice of my physicians, I have increased my activities and do some exercises under the supervision of my family. I feel I am more popular in my family and have more energy. I even feel I can ride my bike again someday in the future. (32-4-Z)

On the contrary, ODLs who reported negative treatment outcomes were more likely to report worse QOL, even if their real health status was better than their perceptions. Such perceived “treatment outcomes”, especially negative perceptions, influenced ODLs’ QOL by causing “interpersonal troubles about communication/trust”, “worry/low self-confidence”, “negative attitude about treatment/exercise/health management”, etc., all of which are important for their QOL.

I feel the treatment outcomes are negative. But they (children/spouse/friends) never believe me. My children told me the treatment outcomes were good. Others told me to stop thinking that I will never be as good as before just because I am an older person. But I know better because the terrible feelings related to my body are mine, not theirs. Then I always get worried. (118-17-N)

Discussion

Although degenerative lumbar diseases have always had negative effects on older adults and been studied for many years, they are difficult to cure.²⁴ The current general treatment purpose for degenerative lumbar diseases is to relieve their unpleasant symptoms. Surgical interventions are not considered unless the symptoms are severe. Therefore, ODLs’ QOL is often reduced by non-medical factors pertaining to their daily lives, among which health-related perceptions play an important role.

Degenerative lumbar diseases can result in an increased risk of fragility fractures.^39,40 But most related clinical degenerative symptoms do not manifest until one becomes older.^41,42 Moreover, as found in this study, ODLs’ QOL is closely associated with their health-related perceptions, including “life barriers”, “subjective health status”, and “treatment outcomes”. ODLs’ QOL scores in “positive” and “negative” groups showed significant differences in all four domains. Higher QOL scores tended to be more strongly associated with positive perceptions.

Fewer life barriers can provide ODLs more comfort or convenience, both practically and psychologically, which are important for a better QOL. ODLs tend to be troubled by the central activity structures in daily life.¹³ In this study, many perceived barriers affected their daily life distinctively and repeatedly. Severe discomfort and inconvenience were associated with such perceived “life barriers”. Activities and individuals that the ODLs cared about (to provide material and labour help) were also associated with such perceived “life barriers”. They are important for ODLs’ QOL. Meanwhile, perceived “life barriers” were also experienced in their interactions with society and the environment. The negative effects of perceived barriers on patients’ interaction with society and environment may also greatly affect their QOL.⁴³

ODLs experience several diseases and related symptoms in their everyday lives. Thus, their subjective perceptions accumulate over time, which are then reflected in various experiences and impact their “subjective health status.”⁴⁴ In this study, negative “subjective health status” were associated with some common factors. For example, pain is one of the first indicators of health-related QOL.⁴⁵ Poor appetite can influence their “subjective health status” by affecting the hypothalamus through the cerebral cortex.⁴⁶ Patients with poor sleep, especially those who have had poor sleep habits for a long period of time, tend to display negative emotions, such as anxiety, worry, and uneasiness.⁴⁷ In this study, these negative “subjective health status” were mentioned frequently by ODLs who also reported poorer QOL, indicating that ODLs’ QOL is associated with their “subjective health status.”

Further, perceived positive “treatment outcomes” showed a positive association with ODLs’ health-related decision-making processes in daily life, while perceived negative “treatment outcomes” negatively influenced their QOL and behaviour patterns. For an individual’s bounded rationality and behavioural psychology, an individual’s health-related behavioural reaction is associated with their perceptions.⁴⁸ A negative perception of “treatment outcomes” can result in limitations to ODLs’ daily life, extra requirements for medical service, constraints in ODLs’ interactions with the society and environment, and behavioural restrictions on life arrangements and expectations. These limitations are closely associated with ODLs’ QOL.

Limitations

Although this study has some strengths, it has several limitations. First, ODLs were recruited from a general hospital in Shanghai. Therefore, the limited sample size and sampling method limit the generalisability of the findings to all ODLs in Shanghai or all of China. Second, the study’s qualitative design precludes causal inferences of ODLs’ QOL and their perceived factors. Third, the reliability and validity to these themes might need to be demonstrated further in a broader context using the relevant questionnaire. Finally, a possible self-selection bias might mislead our consideration if participants in this study tried to emphasise some positive or negative perceptions of QOL.

Conclusion

In this study, ODLs’ QOL was examined across the four domains of physiology, psychology, social relation, and environment. The findings showed that their perceptions, including perceived “life barriers”, perceived “subjective health status”, and perceived “treatment outcomes” were associated with their QOL. Thus, to improve ODLs’ QOL, more attention should be paid to improving their perceptions, which implies that non-medical factors should also be emphasised.