Health-Related Quality of Life (HRQoL) in Sarcoidosis: Diagnosis, Management, and Health Outcomes
Abstract
:1. Introduction
2. Health-Related Quality of Life (HRQoL)
- Personal factors include a patient’s intrinsic potential for adaptability and coping behavior, length of time living with a condition, increasing familiarity with self-management strategies for symptoms and impairment;
- Environmental factors include the extent of family support, financial resources, as well as assistive aids, devices, or techniques that improve physical, mental, or emotional function. This includes access to care and expressly, in the case of sarcoidosis, access to clinicians with sufficient knowledge of sarcoidosis [8];
- Symptom burden includes disease-related symptoms and impairment, medication side effects [11], and the psychological impact of living with the health condition.
2.1. Symptom and Impairment Burden
- Sarcoidosis disease activity clinically suggests granulomatous inflammation impacting health status and, therefore, impairment is potentially reversible with quiescence of disease activity, either through pharmacological treatment or disease self-remission.
- Sarcoidosis damage is the damage and scarring left in the wake of prior destructive sarcoidosis inflammation and granulomatous activity; this tissue damage is not irreversible.
- A combination or an overlap of active disease and irreversible damage; this chronic progressive phenotype suggests reversibility of impairment depends on extent of damage versus treatable inflammatory disease.
- Pre-existing and co-existing comorbidity can confound symptom interpretations and always deserve differential diagnostic attention, e.g., pre-existing hyperthyroidism with presentation with tachycardia in otherwise controlled sarcoidosis, or recent lymphoma mimicking sarcoidosis-like symptoms, even with concomitant granulomatous involvement.
- Non-sarcoidosis related, e.g., coronary artery involvement, etc.
2.2. Participation
2.2.1. Work Life
2.2.2. Family
2.2.3. Social Life
3. Patient-Centeredness
- Respect for patients’ values, preferences, and expressed needs;
- Coordination and integration of care;
- Information, communication, and education;
- Physical comfort;
- Emotional support and alleviation of fear and anxiety;
- Involvement of family and friends;
- Continuity and transition;
- Access to care.
3.1. Patient-Centered Environments
3.2. Communication
3.2.1. Trauma-Informed Patient Communication
- Safety;
- Trustworthiness and transparency;
- Peer support;
- Collaboration and mutuality;
- Empowerment and choice;
- Cultural, historical, and gender considerations.
3.2.2. Shared Decision-Making
+ risk of serious organ dysfunction versus low or no progression or chance of remission
+ disease monitoring versus active treatment
+ anticipated benefit of treatment versus risk of toxicity
= preliminary decision
- Cutaneous sarcoidosis, as an example, could lead to a provider-patient mismatch in terms of disease impact and treatment. In a case of non-facial cutaneous involvement with no other organ involvement necessitating treatment, discussion allows the patient to convey the presence and/or burden of physical symptoms (e.g., pruritus, burning, etc.), and also any psychological impact these symptoms and the cosmetic appearance might have. After the clinician explains treatment options with their benefit vs risk implications (e.g., hydroxychloroquine, topical steroids, etc.), if all symptom factors are none to minimal, the patient may decide to delay treatment in favor of observation; while the patient may opt for treatment if the cosmetic appearance or physical symptom burden is noticeable to them, thus outweighing medication-related side effects or costs.
- In a case of lupus pernio, aggressive treatment is often necessary to achieve adequate disease control (e.g., use of biologic therapy). As patients with this phenotype are often quite impacted by the disease, and typically have extra-cutaneous disease requiring treatment, generally the patient and clinician are aligned in the necessity of treating active disease. However, once active disease has been treated, the clinician may see a lack of active granulomatous inflammation as a satisfactory end result, whereas residual damage in the form of dyspigmentation and scarring may be quite troubling to patients cosmetically and psychosocially. Without discussion, the clinician may fail to recognize that the scarring is causing the patient significant distress (e.g., depressive symptoms, self-esteem). With discussion, the clinician learns of the patient’s distress, and is now in a position to provide support via communicating recognition of the patient’s distress, psychological support, and considering possible cosmetic interventions (Box 1).
3.3. Family as an Extension of the Patient
3.4. Patient Advocacy Organizations
4. Patient-Centered and HRQoL Instruments
- Patient-reported outcome measures (PROMs) that capture changes in symptoms, health status perception, or HRQoL;
- Patient-reported experience measures (PREMs) that identify patient-experienced strengths and weakness of healthcare delivery systems in order to improve the system and thereby, patient experience and HRQoL;
- Patient engagement (or activation) measures (PEMs/PAMs) that assess areas such as disease or medication knowledge, health systems familiarity, or lifestyle awareness, so that patients might receive education or counseling to strengthen self-management skills, and thereby enhance HRQoL;
- Patient preference measures supporting patient decision-making or provide data for value-based health economic choices;
- Clinical checklists that enhance patient outcomes, through decreasing complications and supporting patient-centered care, all of which increase HRQoL.
4.1. Overview of Assessments in Sarcoidosis
4.2. Patient-Centered Checklists
4.3. Operationalizing Instruments
- (a)
- As a detection tool to disclose the need for medical or other intervention in regards to patient health or environment, e.g., depression screening, severity scores, symptom scales, clinician checklists.
- (b)
- As a tracking tool of symptoms, to mark improvement in patient-designated priorities [77], and other patient-reported measures to be trended over time alongside other scores, e.g., to gauge efficacy of treatment, traditional markers, and historical patient events, e.g., hospitalizations, exacerbations, antibiotic/steroid use; thus, enabling patients and clinicians to identify trends leading up to and to prevent recurrent complications [34,83,84].
- (c)
- As a patient–clinician discussion tool, whereby results provide opportunities to initiate discussions on potential reasons for score changes by the patient followed by the clinician who can then offer additional perspective or clarify any misunderstandings. Further, the psychological, emotional, physical, and intellectual exhaustion and burnout incurred by dedicated clinicians [79,80,81,82], can be offset, in addition to checklists, by the framework that PROMs and other tools provide to support difficult discussions regarding milestone health changes, e.g., need for lung transplantation assessment.
5. Common Causes of Symptom Burden in Sarcoidosis
5.1. Psychological Distress
5.2. Cognition
5.3. Pain
5.4. Fatigue
5.4.1. Physical Fatigue
5.4.2. Other Types and Causes of Fatigue
5.4.3. Assessment and Management Considerations of Fatigue
5.5. Issues of Sleep Quality in Sarcoidosis
5.6. Cardio-Respiratory Symptoms: Breathlessness and Cough
5.7. Exercise Intolerance and Muscle Impairment
6. Medication-Related and Complication-Related HRQoL
6.1. Medication-Related HRQoL
6.1.1. Adverse Outcomes
6.1.2. Enhancing Treatment Tolerability
6.2. Complication-Related HRQoL
- Prescribe sufficient medication, only up until the time for the next toxicity screening test to avoid prolonged use of medication without toxicity check.
- Monitoring and logging prednisone and NSAID dosages and duration to support proactive tapering or transitioning to more sustainable medication options.
- Counseling patients on vitamin D regulation in sarcoidosis to prevent hypervitaminosis.
- Mitigate the risk of serious infection by:
- ○
- Ensuring vaccinations are up to date;
- ○
- Considering antibiotic prophylaxis;
- ○
- Counseling on the best practices, in terms of prevention, e.g., handwashing, masking, etc.
- Counseling on medication-related red flags for complications and preventive measures for each medication.
- Counseling on sunscreen use and sun exposure with certain DMARDs and biologic use [152].
- Supporting exercise as medicine and a stress reduction strategy are expanded upon below.
7. HRQoL Self-Management Strategies for Patients and Family Members
7.1. Stress Reduction to Enhance HRQoL
7.2. Exercise and Physical Activity to Enhance HRQoL
8. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Category | Manifestation | Source of Disability/Potential Causes to be Investigated |
---|---|---|
CONSTITUTIONAL | Fevers | Sub-clinical infection, systemic sarcoid |
Weight Loss | Systemic disease, medication-related nausea, depressive symptoms | |
Weight Gain | CNS/endocrine involvement, impairment-related deconditioning, GCs | |
Fatigue | Anxiety, body pain, DMARDS/GCs, dyspnea, headache, hormonal (e.g., thyroid, testosterone), GC or anxiety-related insomnia, GC or sarcoid myopathy, HF, hypercalcemia, nutritional, OSA, PH, systemic disease | |
Insomnia/Poor sleep | Anxiety, body pain, depressive symptoms, dyspnea, GCs, HF, hypercalcemia, OSA, periodic leg syndrome, restless leg syndrome | |
PSYCHOLOGICAL | Anxiety | Dyspnea, impaired coping, GC, hypercalcemia, poor sleep quality, uncertainty about future health/finances, vitamin D dysregulation |
Cognitive impairment | Anxiety, body pain, CNS involvement eye discomfort, GC, fatigue, headaches, hypercalcemia | |
Depressed feelings | Anxiety, body pain, cutaneous disfigurement; CNS involvement, fatigue, GCs, hypercalcemia, impaired coping, progressive/irreversible impairment, social isolation, uncertainty about future health/finances, vitamin D dysregulation | |
NEUROLOGICAL | Seizures | CNS involvement |
Headache | CNS, endocrine or ocular involvement, dyspnea, DMARDs/GCs, hypercalcemia, insomnia, OSA | |
Weakness | CNS/spinal cord involvement, fatigue, GC or sarcoid myopathy, or large fiber neuropathy, hypercalcemia | |
Falls/Gait imbalance | CNS/spinal cord, involvement myopathy, small and/or large fiber neuropathy involvement | |
Numbness/Tingling | CNS/PNS, small fiber neuropathy, hypercalcemia | |
Dysautonomia (palpitations, sweating abnormalities, orthostatic intolerance, bloating, constipation, diarrhea) | Hypercalcemia, small fiber neuropathy associated symptoms | |
OCULAR | Acuity impairment | Glaucoma, medication, ocular muscle or nerve involvement, synechiae, uveitis |
Dryness | Lacrimal gland involvement, medication related | |
Pain, pressure | Glaucoma, uveitis; CNS, lacrimal gland or sinus involvement, | |
Tearing | ||
OTOLARYNGOLOGICAL | Sinus congestion | GC/DMARD related infection; sarcoid sinus involvement |
CARDIAC | Dyspnea, exercise intolerance, palpitations | Conduction abnormalities, HF, hypercalcemia, PH |
PULMONARY | Dyspnea, cough, exercise intolerance | Infection, ILD, PH |
GASTROINTESTINAL | Dyspepsia | GC/DMARD related |
Nausea, vomiting | CNS, GC/DMARD related, hypercalcemia, renal calculi | |
ENDOCRINE | Fatigue | Testosterone, thyroid-related, sarcoid or treatment related hyperglycemia, SIADH |
Bone fracture | Systemic disease, GCs, primary or secondary osteoporosis, hormone deficiency | |
Weight gain/loss | hypothalamic involvement, inflammation, GC-related | |
DERMATOLOGICAL | Disfigurement | Dyspigmentation, lupus pernio, facial lesions |
Pruritus | Lesion-related, medication-related | |
Pain | Erythema nodosum, ulceration, deep subcutaneous granulomas | |
MUSCULOSKELETAL | ||
Body pain | Boney lesions, joint, hypercalcemia, muscle, neurological, poor sleep | |
Bone fracture | See above | |
Exercise intolerance | Cardiac or pulmonary involvement (e.g., HF, ILD, PH), Hypercalcemia, Muscle weakness, Deconditioning, Underlying Infection | |
Myopathy/Myalgia | Sarcoidosis or GC related | |
Weakness | CNS or muscle involvement |
Central Nervous System |
---|
Steroid induced psychosis |
Changes in mood and behavior |
Dysphoria |
Insomnia |
Changes in memory |
Cerebral atrophy |
Ocular |
Glaucoma |
Cataracts |
Cardiovascular |
Hypertension |
Dyslipidemia |
Thrombosis |
Vascular frailty |
Gastrointestinal |
Peptic ulcer |
Gastrointestinal bleeding |
Pancreatitis |
Hepatic steatosis |
Renal |
Increased sodium retention |
Increased potassium excretion |
Endocrine |
Diabetes mellitus |
Weight gain |
Cushing’s syndrome |
Adrenal suppression |
Hypogonadism |
Male gynecomastia |
Musculoskeletal |
Osteoporosis |
Bone necrosis |
Muscle atrophy |
Myopathy |
Skin |
Striae rubrae distensae |
Skin frailty and tearing |
Delayed wound healing |
Glucocorticoid induced acne |
Secondary infections, including candidiasis |
Perioral dermatitis |
Telangiectasia |
Skin atrophy |
Seborrheic dermatitis |
Immune |
Reactivation of latent viruses |
Increased risk of infection |
Immunosuppression |
Serious Infection |
Candidiasis: oral/cutaneous/vaginal |
Bone Health [148,149,150] |
Counsel patients about the risk of osteoporosis and screen for risk factors. |
Baseline DEXA scan (for patients anticipated to need glucocorticoids for >3 months). Initiation of bisphosphonate for prevention according to American College of Rheumatology guidelines. |
Calcium supplementation is controversial in sarcoidosis and vitamin D supplementation, only if 1,25 dihydroxy is low. |
Counseling on lifestyle modifications—smoking cessation, weight-bearing activities. |
Baseline height as surrogate for vertebral height/compression fracture. |
Gastrointestinal [148] |
Counsel on gastric protection, take with food, H2 Blocker, or PPI depending on risk level. Assess for risk factors for PUD–history of PUD, heavy smokers, heavy alcohol use, age >65 years old, other medications that increase risk of PUD. |
For patients on glucocorticoids and nonsteroidal anti-inflammatory drugs, start PPI. |
For patients with multiple risk factors for PUD, consider addition of PPI. |
Endocrinology [148] |
In patients with diabetes, glucose monitoring with sliding scale insulin instructions. Consider screening for diabetes–hemoglobin A1C, basic metabolic panel, or fingerstick glucose. |
Monitoring fingerstick glucose or basic metabolic panel in patients. |
Consider prescribing home glucometer for patients on long-term high dose glucocorticoids. |
Monitoring of electrolytes. |
Cardiovascular [148] |
Baseline lipid panel. |
Blood pressure monitoring and treatment of hypertension if indicated. |
Immunizations [148] |
Inquire about vaccination history. |
Live vaccines should be given 2–4 weeks prior to initiation of glucocorticoids if possible. |
Administer vaccines according to standard schedule as indicated; withholding live vaccines. |
Psychiatric [148] |
Inquire about history of neuropsychiatric disease, suicidal ideation, and self-harm. |
Referral to psychiatrist if indicated. |
Counsel family members on risk of mood and behavior changes and advise physician if any changes are noted. |
Dose glucocorticoids in the morning to reduce insomnia. Monitor for insomnia, manage insomnia as needed. |
Ocular [148] |
Assess for personal and/or family history of glaucoma or cataracts. |
Obtain baseline ophthalmologic exam for patients who may need long-term glucocorticoid treatment. |
Infectious [148] |
Consider PCP prophylaxis for patients taking the equivalent of ≥20 mg prednisone for ≥4 weeks, especially if a second risk factor is present—hematologic malignancy, interstitial lung disease, or use of other immunosuppressant medication. |
Inquire about infection history and risk factors for bacterial, fungal, and viral infections, and screen if indicated. |
Hypersensitivity to any component of formulation |
Concurrent administration of live or live-attenuated vaccines |
Depression, uncontrolled anxiety, or history of psychosis |
History of peptic ulcer disease or gastrointestinal bleed |
Osteoporosis |
Current or recent joint infection |
Glaucoma/elevated intraocular pressure |
Cataract |
Diabetes mellitus/uncontrolled hyperglycemia |
Uncontrolled hypertension |
Elevated BMI/metabolic syndrome |
Uncontrolled bacterial or viral infection |
Systemic fungal infection |
Strategies to Improve and Preserve HRQoL |
---|
Screening with review of systems; investigate and address other potential sarcoidosis manifestations. |
Continually keep in mind that new or worsening symptoms may not be sarcoidosis. |
Screening for treatment side effects to improve adherence and tolerability. |
Screening for fatigue, assessment, and intervention for predominant causes. |
Screening for impaired sleep quality and OSA. |
Screening for and treating depression and anxiety. |
Ensuring patient health literacy as a priority of treatment. |
Essential clinician communication using shared-decision making regarding their interpretation of test results, disease severity, anticipated medication response, and prognosis. |
Ascertain, through reflecting back to the patient’s understanding and opinion. |
Recognition that disease activity may not be reflected in the results of the ‘objective’ tests and that lack of evidence on ‘objective’ testing does not preclude disease activity. |
Anticipatory guidance regarding medication side effects. |
Encouragement to perceive exercise as medicine, regardless of ability. |
Referral for physical training and pulmonary rehabilitation for those with reduced exercise tolerance and unexplained fatigue. Patient engagement depends on their report of debilitation at any given time, as certain types of flares are globally incapacitating. |
Publicize patient support group meetings as well as reliable patient education sources. |
Preventive strategies for complications of disease or treatment: immunizations; medication monitoring, bone, and gastric protection; prophylactic antibiotic, as appropriate. |
Opportunities for patients to learn skills for well-being, such as coping, mindfulness techniques, and organizational skills. |
Strata of Engagement | Advisement | Comments |
---|---|---|
No cardiopulmonary involvement | Unrestricted but targeted to and guided by patient needs, and tolerance | Gradual increment of intensity, repetitions, and duration |
Mild cardiopulmonary symptoms | Moderate aerobic intensity with moderate-load resistance exercises | Gradual increment of intensity, repetitions, and duration |
Severe cardiopulmonary symptoms | Individualized modification of intensity and duration, with supplemental oxygen as needed | Can be intensified up to 75–80% of a patient’s projected maximal load |
Desaturation with exercise | As above for severe | |
Increase of systolic pulmonary artery pressure with exercise | Load reduction on systemic and pulmonary circulation is an important consideration | Rapid changes in pulmonary hemodynamics interval training may increase risk of syncope |
Concept | Advisement | Comments |
---|---|---|
Exercise Initiation | All patients screened for clinically significant ILD and PH | |
Assess current activity levels with FITT | FITT = Frequency, Intensity, Type, Time, an exercise program/prescription created by patient or clinician | |
Consider assessing patient goals with PSFS | PSFS = Patient Specific Functional Scale, a patient created scale of their unique priorities | |
Given the fairly high prevalence of sarcoid myopathy and neuropathy, aerobic and muscle testing prior start of exercise | Submaximal ergometer cycle test or treadmill test and muscle tests like TST, 30-sec CST and FI-2 | |
Sustaining exercise | Anticipatory guidance of fluctuating fatigue/pain challenging exercise | Encourage mindfulness practice and pleasure principals during exercise to redirect frustration and disappointments |
Education on stretching safety | Emphasis on consistency of practice and expectations of incremental improvement | |
Developing alternate options for inclement weather or GI exacerbations | Indoor options Online class options | |
Consider monitoring achievement with PSFS | ||
Start gently and escalate with improvement | ||
Recommendation for home general physical activity (e.g., walks) 30 min/5 days weekly | ||
Aerobic and muscle testing after exercise period to evaluate intervention | Submaximal ergometer cycle test or treadmill test and muscle tests like TST, 30-sec CST and FI-2 |
Expansive patient perspective investigations. |
Isolate determinants of racial disparities in sarcoidosis, develop proactive interventions for targeted reversal of identified disparities. |
Characterize presentations and descriptors to help identify type and cause of fatigue in sarcoidosis. |
Develop protocol for management of fatigue according to type and cause. |
Investigations to characterize ‘flare’ types, relational causes and recovery. |
Integrated mind–body strategy impacts on inflammation, pulmonary functioning, fatigue, and HRQoL. |
Exercise and physical activity impact on inflammation and other biomarkers, HRQoL. |
Testing muscle endurance with FI-2/FI-3 in correlation with fatigue and other assessment parameters. |
Identify optimal parameters of physical training in sarcoidosis. |
Impact of sarcoidosis-related psychological distress on patient perceptions of their loved ones’ anxiety and emotional distress. |
Impact of home-based prescriptions for physical activity and exercise on depressive symptoms, fatigue, inflammation, and activity levels in patients with sarcoidosis. |
Examine HRQoL in the context of morbidity and survival in sarcoidosis. |
Examine HRQoL interventions on symptom distress and survival. |
Examine exercise on HRQoL and survival as stratified for disease severity. |
Development of sarcoidosis-specific patient-reported experience measure (PREM). |
Development of sarcoidosis-specific patient engagement measure (PEM). |
Develop and test CME practice modules on:
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Share and Cite
Saketkoo, L.A.; Russell, A.-M.; Jensen, K.; Mandizha, J.; Tavee, J.; Newton, J.; Rivera, F.; Howie, M.; Reese, R.; Goodman, M.; Hart, P.; Strookappe, B.; De Vries, J.; Rosenbach, M.; Scholand, M.B.; Lammi, M.R.; Elfferich, M.; Lower, E.; Baughman, R.P.; Sweiss, N.; Judson, M.A.; Drent, M. Health-Related Quality of Life (HRQoL) in Sarcoidosis: Diagnosis, Management, and Health Outcomes. Diagnostics 2021, 11, 1089. https://doi.org/10.3390/diagnostics11061089
Saketkoo LA, Russell A-M, Jensen K, Mandizha J, Tavee J, Newton J, Rivera F, Howie M, Reese R, Goodman M, Hart P, Strookappe B, De Vries J, Rosenbach M, Scholand MB, Lammi MR, Elfferich M, Lower E, Baughman RP, Sweiss N, Judson MA, Drent M. Health-Related Quality of Life (HRQoL) in Sarcoidosis: Diagnosis, Management, and Health Outcomes. Diagnostics. 2021; 11(6):1089. https://doi.org/10.3390/diagnostics11061089
Chicago/Turabian StyleSaketkoo, Lesley Ann, Anne-Marie Russell, Kelly Jensen, Jessica Mandizha, Jinny Tavee, Jacqui Newton, Frank Rivera, Mike Howie, Rodney Reese, Melanie Goodman, Patricia Hart, Bert Strookappe, Jolanda De Vries, Misha Rosenbach, Mary Beth Scholand, Mathew R. Lammi, Marjon Elfferich, Elyse Lower, Robert P. Baughman, Nadera Sweiss, Marc A. Judson, and Marjolein Drent. 2021. "Health-Related Quality of Life (HRQoL) in Sarcoidosis: Diagnosis, Management, and Health Outcomes" Diagnostics 11, no. 6: 1089. https://doi.org/10.3390/diagnostics11061089