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Abstract

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. SUBJECTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

Objective

Little is known about the impact of family environment on the long-term adjustment of patients with juvenile-onset fibromyalgia (JFM). Our objective was to evaluate whether family environment in early adolescence predicted later physical functioning and depressive symptoms of adolescents with JFM as they transitioned to early adulthood in the context of a controlled long-term followup study.

Methods

Participants consisted of 39 youth (mean age 18.7 years) with JFM and 38 healthy matched controls who completed web-based surveys about their health status (Short Form 36 health survey) and depressive symptoms (Beck Depression Inventory II) ∼4 years after a home-based, in-person assessment of child and family functioning. During the initial assessment, parents of the participants (94% mothers) completed the Family Environment Scale and adolescents (mean age 14.8 years) completed self-report questionnaires about pain (visual analog scale) and depressive symptoms (Children's Depression Inventory).

Results

The results indicated that family environment during early adolescence significantly predicted greater depressive symptoms in early adulthood for both the JFM group and the healthy controls. In particular, a controlling family environment (use of rules to control the family and allowing little independence) during early adolescence was the driving factor in predicting poorer long-term emotional functioning for patients with JFM. Family environment did not significantly predict longer-term physical impairment for either group.

Conclusion

Adolescents with JFM from controlling family environments are at an increased risk for poorer emotional functioning in early adulthood. Behavioral and family interventions should foster independent coping among adolescents with JFM and greater parenting flexibility to enhance successful long-term coping.


INTRODUCTION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. SUBJECTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

Juvenile fibromyalgia (JFM) is a chronic pain condition characterized by widespread musculoskeletal pain and several associated symptoms that contribute to significant physical impairment and psychosocial difficulties [1, 2]. Many adolescents with JFM experience symptoms that persist into early adulthood and report poorer quality of life and psychosocial functioning than their healthy matched peers [3]. However, not all adolescents with JFM experience enduring physical and psychosocial sequelae as they transition to young adulthood, indicating that some cope reasonably well over time despite their symptoms [3]. Early identification of factors that may place adolescents with JFM at risk for adjustment difficulties as they make the transition to young adulthood is of great importance to help them effectively navigate the challenges of this crucial developmental phase.

The transition to early adulthood is a critical period comprised of numerous challenges, including developing increased independence and self-sufficiency as well as exploring identity issues related to personal and vocational goals [4]. In fact, the numerous changes and vital decisions that occur during early adulthood can have long-lasting implications for an individual's adult life course [4]. For many youth with JFM, these challenges can be increasingly difficult as they transition to adulthood while still dealing with ongoing JFM symptoms and difficulties with daily functioning. A successful transition through early adulthood is likely influenced by family environment and relationships [5], but little is known about how family environment affects long-term outcomes in youth with JFM.

The family environment during childhood and adolescence can shape the psychosocial adjustment and health outcomes in adolescents and young adults both with and without chronic illness [6-8]. In typically developing children, negative family environments (e.g., high in conflict) have been associated with poorer physical functioning, health, and psychosocial functioning in adulthood [6]. The presence of a chronic condition, such as JFM, could conceivably increase the impact of family relationships given the family's daily involvement in caregiving and managing symptoms [9], and the family environment can have a reciprocal influence on both pain and disability [10]. Therefore, it is likely that family factors play an important role in predicting long-term functioning of patients with JFM, but the consequences of different family environments on outcomes in early adulthood are as yet unknown.

In a cross-sectional study of JFM, children who perceived their family environment as highly controlled reported higher pain intensity and their rheumatologists rated them as having poorer health status [7]. Furthermore, in families that are controlling or engage in protective parenting, children with chronic pain reported higher levels of disability [11, 12] and more depressive symptoms [11]. In our prior study of psychosocial and family functioning of adolescents with JFM, families of patients with JFM reported significantly poorer family functioning and more conflicted family relationships than healthy controls [1]. It remains unclear whether or not these early family factors have any predictive impact on adolescents' functioning or whether this long-term impact persists beyond adolescence into young adulthood.

As part of our ongoing research program examining long-term outcomes of individuals with JFM, we conducted followup assessments of the same cohort of adolescents enrolled in our prior study [1] approximately 4 years after their initial assessment and found that the majority of them continued to experience pain and other JFM symptoms, along with poorer physical and emotional functioning [3]. The objective of the current study was to evaluate whether family environment characteristics (conflicted, controlling, and supportive) in adolescence predicted physical functioning and depressive symptoms for JFM and healthy controls when they were in their late adolescent/early adult years at followup. We hypothesized that negative (conflicted and/or controlling) family environments would significantly predict poorer long-term physical functioning and greater depressive symptoms for youth with JFM compared to healthy controls.

Significance & Innovations

  • This study examined the longitudinal impact of family environment on physical and psychosocial functioning in patients with juvenile-onset fibromyalgia (JFM) relative to healthy controls.
  • A controlling family environment during adolescence predicted greater depressive symptoms in early adulthood for patients with JFM.
  • Family environment did not predict long-term physical functioning in JFM patients or healthy controls.
  • Early identification of family characteristics that place adolescents at greater risk for long-term distress may help target interventions.

SUBJECTS AND METHODS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. SUBJECTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

Participants

Participants eligible for this study included 47 adolescent patients (ages 13–17 years) who were diagnosed with JFM (using the Yunus and Masi criteria [2]) and initially recruited from a pediatric rheumatology clinic. The 46 contemporaneous healthy control peers were selected from the classrooms of patients with JFM and matched based on closest birth date, sex, age, and having no chronic illness [1]. At the followup assessment (range 12–79 months), all participants in the original study (JFM and controls) were contacted to complete an online followup survey as part of a larger longitudinal study of patients with JFM [3].

Procedure and measures

Initial assessment

At the initial assessment, data were collected in person at the family's home between 2006 and 2008. Both parents' participation was encouraged; however, in the majority of cases, mothers (94%) were the primary informant. Informed consent and assent were obtained from parents and adolescents. As part of a larger assessment protocol [1], the following measures were used to assess adolescents' pain intensity, depressive symptoms, and family functioning.

Average pain intensity rating over the past week was measured using a 0–10-cm visual analog scale, which is included as part of the Modified Fibromyalgia Impact Scale for Children [7].

The Children's Depression Inventory, a well-validated 27-item self-report questionnaire, was used to measure the severity of depressive symptoms reported by the adolescents over the past 2 weeks [13]. Participants select 1 of 3 statements for each item and total scores range from 0–54, with a clinical cutoff score of 12. In this study, the total raw score was used as an overall indicator of severity of depressive symptoms, where higher scores represent a greater level of depressive symptoms.

The Family Environment Scale (FES) was used to assess parental perception of the family climate [14]. The FES is comprised of 10 subscales, including items assessing family cohesion, expressiveness, conflict, independence, achievement orientation, intellectual/cultural orientation, active/recreational orientation, moral/religious orientation, organization, and control. Scores on these subscales can be combined into higher-order factor scales (supportive, conflicted, and controlling) that demonstrate strong psychometric properties [15]. A supportive family environment represents the family's mutual interest, concern, and support, whereas a conflicted environment characterizes increased family conflict within a system that lacks organization and support. Lastly, a controlling family environment uses rules to control the family and fosters little independence. For the purposes of this study, we were specifically interested in the predictive value of the 3 broadband family characteristics of support, control, and conflict. Higher scores represented a greater level of family support, control, and conflict.

Followup assessment

At followup (assessments conducted between 2008 and 2011), patients with JFM and controls (or their parents if ages <18 years) were contacted by phone to obtain consent for participation in a web-based followup study. Written informed consent (with parental permission and written assent for youth ages <18 years) was obtained by mail. Participants then received a unique log-in name and password to access a secure web site to complete the study questionnaires. The web-based survey included the following measures to assess physical functioning and depressive symptoms, which were the primary outcomes of interest because they are commonly assessed and considered important by clinicians and recommended for use in treatment studies as indicators of functioning [16-18].

The Short Form 36 health survey version 2 is a self-report questionnaire with strong psychometric properties designed to measure an individual's perception of his/her overall health status in the past 4 weeks [19] across 8 health domains: physical functioning, physical role limitations, social functioning, bodily pain, mental health, emotional role limitations, vitality, and general health. The physical functioning domain was of primary interest for this study and yields norm-based T scores. A T score of 50 represents average functioning, and higher scores represent better functioning.

The Beck Depression Inventory II, a well-validated 21-item self-report questionnaire for older adolescents (ages ≥13 years) and adults, was used to assess the severity of depressive symptoms in the past 2 weeks [20]. Participants select 1 of 4 statements for each item. Total scores range from 0–63, with a clinical cutoff score of 17. The total raw score was used as an indicator of depressive symptom severity, such that higher scores represent greater levels of depressive symptoms.

Detailed methodology of the home-based study [1] and the followup study of physical and psychosocial functioning in JFM [3] is described elsewhere. Both projects were approved by the institutional review board and conducted in accordance with current ethical standards for human subject research.

Statistical analyses

Baseline characteristics of the participants who completed both the initial assessment and the followup assessment versus those who completed the initial assessment but did not complete the followup survey were compared to ensure that there was no systematic source of bias due to selective attrition. Pearson's product-moment correlations on all predictive and outcome variables were computed. Hierarchical regressions were conducted in 4 steps. In step 1, group (JFM versus healthy controls) was entered; in step 2, initial pain intensity ratings and depressive symptoms (child factors) were entered. Conflicted, controlling, and supportive family environment scores (family factors) were entered in step 3, and group by family environment interactions were entered in step 4. Adolescent physical functioning and depressive symptoms at followup were the primary outcomes.

RESULTS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. SUBJECTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

Sample characteristics

The sample consisted of 40 patients with JFM (85.1% of the original JFM cohort) and 38 controls (82.6%) who completed both the initial and followup assessments. Of these, 1 participant (JFM patient) had incomplete data at followup. The final study sample size of 77 (n = 39 JFM patients, n = 38 controls) was compared to the participants who completed the initial home-based study but did not complete the followup web-survey (n = 15) to examine baseline characteristics. No significant differences were found between the groups in demographics (adolescent age, race, and socioeconomic status) or functioning during early adolescence, including functional disability (t = −0.48, P = 0.63), pain intensity (t = −0.83, P = 0.41), depressive symptoms (t = 0.70, P = 0.49), and overall family functioning (t = 1.48, P = 0.14). The majority of adolescents in the final sample were female (91%) and white (86%), with a mean ± SD age of 14.8 ± 1.76 years at the initial assessment and 18.7 ± 2.34 years (range 14–23 years) at followup. The mean ± SD length of followup was 44.16 ± 18.0 months. There were no significant differences between JFM patients and healthy controls with regard to their demographic characteristics at followup (e.g., living situation, work status, etc.) (Table 1).

Table 1. Demographic characteristics at followup for healthy controls and juvenile fibromyalgia (JFM) participants
 Healthy controls (n = 38), no. (%)JFM (n = 39), no. (%)
Marital status  
Single37 (97.4)34 (87.2)
Married1 (2.6)5 (12.8)
Living situation  
With parents25 (65.8)28 (71.8)
With spouse1 (2.6)4 (10.3)
With other (roommate, partner, dormitory)11 (28.9)5 (12.8)
Alone1 (2.6)1 (2.6)
Missing0 (0.0)1 (2.6)
Attending college/vocational school23 (60.5)17 (43.6)
Work status  
Full time8 (21.1)9 (23.1)
Part time19 (50.0)15 (38.5)
Not working11 (28.9)15 (38.5)
Source of income  
Parents21 (55.3)15 (38.5)
Job12 (31.6)11 (28.2)
Spouse0 (0.0)4 (10.3)
Scholarship0 (0.0)1 (2.6)
Student loans2 (5.3)1 (2.6)
Other0 (0.0)1 (2.6)
Missing3 (7.9)6 (15.4)

Correlational analyses indicated that higher levels of family conflict were significantly associated with lower scores on the supportive dimension in both the JFM group and the healthy controls. For patients with JFM, more depressive symptoms and a controlling family environment at the initial assessment were associated with greater depressive symptoms at followup (Table 2). In healthy controls, higher pain intensity during adolescence was associated with greater depressive symptoms at the initial assessment and poorer physical functioning at followup (Table 3). Participant age at baseline and the amount of time elapsed since baseline (in months) were not significantly associated with physical or emotional functioning at followup for healthy controls or JFM patients.

Table 2. Correlations among age, depressive symptoms, pain, and family environment at the initial assessment and depressive symptoms and physical functioning at followup for the JFM groupa
 Initial assessmentFollowup
AgeCDIAverage painFES conflictFES controlFES supportTime since baselineBDI-IIPhysical function
  1. a

    JFM = juvenile fibromyalgia; CDI = Children's Depression Inventory; FES = Family Environment Scale; BDI-II = Beck Depression Inventory II.

  2. b

    P < 0.01.

  3. c

    P < 0.05.

Age        
CDI0.104       
Average pain−0.0940.147      
FES conflict−0.0920.2130.028     
FES control−0.0550.1020.183−0.050    
FES support0.094−0.0250.061−0.632b−0.021   
Time since baseline−0.009−0.332c0.0050.0380.0620.139  
BDI-II0.0480.411b0.1300.1020.379c0.1480.024 
Physical function−0.0600.2470.0840.2250.209−0.1120.1940.043
Table 3. Correlations among age, depressive symptoms, pain, and family environment at the initial assessment and depressive symptoms and physical functioning at followup for the healthy control groupa
 Initial assessmentFollowup
AgeCDIAverage painFES conflictFES controlFES supportTime since baselineBDI-IIPhysical function
  1. a

    CDI = Children's Depression Inventory; FES = Family Environment Scale; BDI-II = Beck Depression Inventory II.

  2. b

    P < 0.01.

  3. c

    P < 0.05.

Age        
CDI0.221       
Average pain0.2790.562b      
FES conflict−0.081−0.0090.056     
FES control−0.152−0.2770.1640.017    
FES support−0.108−0.0740.047−0.390c−0.154   
Time since baseline0.065−0.0810.0120.019−0.0520.113   
BDI-II−0.0330.436b0.2630.2240.102−0.193−0.058 
Physical function−0.193−0.316−0.348c0.0710.1510.1550.0980.009

Factors predictive of longer-term functioning

As expected, patients with JFM had significantly poorer physical functioning at followup compared to healthy controls. However, there was a nonsignificant overall predictive model for physical functioning, such that none of the family environment subtypes significantly predicted long-term physical impairment in either JFM patients or healthy controls (Table 4). On the other hand, results from the hierarchical regression revealed that patients with JFM had significantly greater depressive symptoms at followup compared to healthy controls, in which group membership accounted for 15.5% of the variance in long-term depressive symptoms. Additionally, depressive symptoms during early adolescence (Children's Depression Inventory) were significantly associated with depressive symptoms at followup (Beck Depression Inventory II). After accounting for baseline child factors, a controlling family environment significantly explained an additional 9.4% of the variance in depressive symptoms at followup (Table 5).

Table 4. Hierarchical regression analysis on family environments predictive of long-term physical functioning (SF-36 physical function scale)a
 βPR2R2 change
  1. a

    Short Form 36 health survey (SF-36) physical function scale is the primary outcome. JFM = juvenile fibromyalgia; CDI = Children's Depression Inventory; FES = Family Environment Scale.

  2. b

    P < 0.001.

Step 1    
Group (JFM, control)−7.844< 0.0010.1640.164b
Step 2    
Pain intensity−0.5840.184  
CDI0.0500.6340.1840.020
Step 3    
FES conflicted0.4650.058  
FES controlling0.4200.083  
FES supportive0.2730.2190.2520.068
Step 4    
Group × conflicted0.0210.968  
Group × controlling0.2350.638  
Group × supportive−0.3600.4320.2660.013
Table 5. Hierarchical regression analysis on family environments predictive of long-term depressive symptoms (BDI-II)a
 βPR2R2 change
  1. a

    Beck Depression Inventory II (BDI-II) is the primary outcome. JFM = juvenile fibromyalgia; CDI = Children's Depression Inventory; FES = Family Environment Scale.

  2. b

    P < 0.001.

  3. c

    P < 0.01.

Step 1    
Group (JFM, control)7.982< 0.0010.1550.155b
Step 2    
Pain intensity0.1540.715  
CDI0.3570.0010.3040.149b
Step 3    
FES conflicted0.3430.134  
FES controlling0.6750.004  
FES supportive0.2960.1580.3990.094c
Step 4    
Group × conflicted0.0210.966  
Group × controlling0.5640.223  
Group × supportive0.6280.1390.4320.034

DISCUSSION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. SUBJECTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

To our knowledge, this is the first study to examine the longitudinal impact of family environment during adolescence on physical and psychosocial functioning in patients with JFM as they transition to early adulthood. As reported in a previous study [1], families of adolescent patients with JFM demonstrated significantly higher levels of conflict and poorer overall family functioning than families of adolescents without a chronic illness. In this long-term followup study of the same cohort of JFM patients and controls, we found that the initial levels of conflicted relationships did not appear to have any short- or long-term negative impact on physical or emotional functioning. On the other hand, after taking into account initial pain intensity and depressive symptoms, a controlling family environment during adolescence predicted significantly higher levels of depressive symptoms at followup in patients with JFM compared to healthy controls. Interestingly, at the initial assessment, families of adolescents with JFM and controls did not significantly differ on the “controlling” dimension [1]. This suggests that a controlling family environment, when it occurs in children with a chronic condition such as JFM, might increase youths' vulnerability for future psychosocial sequelae even if the environment is not more controlling than is typical in healthy control families.

A controlling family environment likely contributes to poorer long-term functioning in several ways. Within such an environment, parents typically implement many rules in planning and managing family life that are often rigid and unadaptable to change [15]. In fact, a controlling family environment may be an adaptation among families caring for a child with chronic illness due to the considerable physical, psychological, and social demands placed on families related to medical management [21]. In the context of JFM, the utilization of control to maintain the family system may be motivated by parents' excessive concern for their child's well-being and a degree of protective parenting behavior that might stem from an underlying component of parental anxiety [11, 22]. Therefore, a controlling family environment may be adaptive in the short term because it helps parents manage anxiety about their child's health and regulate their own exposure to stress by maintaining predictability in the family system, but it may be maladaptive for teens in the long run because it unintentionally hinders development of the adolescents' independence in illness self-management. Consequently, parental control may eventually contribute to the development of long-term internalizing problems [23].

Because protective parenting behavior can undermine adolescents' level of independent functioning by limiting their activities and responsibilities [24-27], these patients likely have underdeveloped independent skills needed to successfully manage their transition to young adulthood. Instead, adolescents may use pain as a vehicle to express their emotional needs and dependence on others due to reinforcement by the family system in their early years [28]. By early adulthood, subtle differences in independent behaviors begin to emerge in patients with JFM compared to their healthy counterparts, with a greater proportion of patients with JFM relying on others for support (e.g., living with parents, married), not working, and not attending college or vocational school. As such, when provided with opportunities during young adulthood of decision making about personal, health, and vocational roles and working toward independence and self-sufficiency, these patients may not be primed with the skills needed to navigate these transitional goals.

Family environmental factors were not predictive of physical functioning, which suggests that family functioning as measured in this study may not have a direct impact on this domain. Rather, the complexity of family functioning in JFM may be influenced by other parental factors not captured by the FES measure. For example, the parents' own pain history and/or parents' psychological distress are additional factors that have been implicated in other studies as being related to children's physical functioning [7, 29]. Additional research is warranted in this area to examine the role of parental factors, the impact of parental factors on the family environment, and how the interaction of parent and family factors may influence long-term functioning.

The small sample size in this study limited our ability to examine multiple parent and family factors; therefore, additional studies are needed to continue identifying potential early risk factors. Additionally, the lack of a followup assessment of the family environment limits our evaluation of how family relationships may have changed over time. Lastly, in the healthy control group, baseline pain intensity negatively affected their physical functioning at followup. Although participants with a long-term medical or pain condition were excluded from recruitment for the healthy control cohort, it is likely that some healthy control participants had some undiagnosed medical or pain concerns that continued to be problematic at followup.

In summary, the study findings enhance our understanding of the long-term impact of the family environment in patients with JFM. Specifically, although families of adolescents with JFM may have initially reported higher levels of conflict, it did not seem to have much bearing on the long-term adjustment of youth with JFM as they transitioned to young adulthood. It was the adolescents who were exposed to more rigid and tightly controlled family environments that were at greater risk for increased depressive symptoms in early adulthood. Therefore, health professionals working with patients with JFM should be aware that parent–child relationships and environments that appear rigid, are rule bound, and provide few opportunities for independent behaviors may make an adolescent patient with JFM vulnerable for poorer emotional functioning in the future. Such families might present as compliant with medical recommendations and require less time and attention compared to those families who present with high levels of conflict. In fact, families that engage in protective parenting have been found to make more health care visits to manage pain symptoms [30]. Therefore, families that are overprotective or controlling may in fact have a greater need for intervention than families that present with conflicted relationships who may benefit from information and support to help them with the short-term process of adjusting to a new diagnosis and illness management challenges. Early identification of family characteristics that place adolescents at greater risk for long-term distress may help in planning for family-based interventions to encourage parents to increase opportunities for independent behavior and decision making for adolescents with JFM. Targeting these skills early during adolescence can help improve pain management skills, prepare patients with the independent skills needed to promote a smoother transition to young adulthood, and lead to improved emotional adjustment and illness management in adulthood.

AUTHOR CONTRIBUTIONS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. SUBJECTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

All authors were involved in drafting the article or revising it critically for important intellectual content, and all authors approved the final version to be published. Dr. Sil had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Study conception and design. Kashikar-Zuck.

Acquisition of data. Lynch-Jordan, Ting, Kashikar-Zuck.

Analysis and interpretation of data. Sil, Peugh, Noll, Kashikar-Zuck.

REFERENCES

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. SUBJECTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES
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