Chronic diseases

Respondents’ Self-Report of Chronic Diseases


By: Didi Kriegsman, Bianca Schalk, Saskia Pluijm, Lisanne Verweij

LASA035
LASA235
LASA435
LASA602
LASA702

Contact: Natasja van Schoor

Files about or associated with chronic diseases included in the LASA study:

Files

Topic

B

C

D

E

F

G

Main interview:

035

Chronic diseases

X

X

X

X

X

X

235 Number of chronic diseases

X

X

X

X

X

X

435 Longitudinally cleaned files

X

X

       
               
Telephone survey:
C602 Proxy & respondent   X        
602 Only with proxy     

X

X

X

X

702 Only with respondent    

X

X

X

X

               
Frail study:*
C702 Frail study with respondent            
C712 Frail study with proxy            
               
Medication:**
152 ATC codes

X

X

X

X

X

X

35 Type & combined variables

X

X

X

X

X

X

               
Disease algorithms:
*** Cardiovasulair disease

X

X

X

     
**** Osteoarthritis

X

X

X

X

X

 


* Data of the frail study is collected between the C-cycle and D-cycle.
** Information on the General practitioner (GP) data collection of 1992/93 can be found in an article by Kriegsman & Penninx 1996. Information on the GP data collection 2000/01 can be found in the documentation on ‘LASACG01: Documentation second General Practitioner data collection (2000- 2001)’ and information on the GP data collection 2005/06 can be asked to L. Schaap.
*** In 152 the medication ATC codes and names are the same in all cycles and the number per cycle is the same. In B352 a maximum of 6 medications are asked, the following measurements contain a maximum of 8 medications. See documentation on medication.
**** See documentation Algorithms CHD_docu on ‘LASA BCD Algorithms for cardiac diseases and cardiovascular diseases LASA’. The prevalence of CHD can be found in file LASAZH01. The algorithm can be run over the E and F cycles, since the GP data collection 05/06 is recently completed.
***** See documentation Algorithms OA_docu on ‘Algorithm for presence of osteoarthritis - LASA BCDEF’. Prevalence and incidence data files are available (LASA…).

Background
In the conceptual model that forms the basis of the LASA-design, chronic diseases are included as independent variables or, in other words, as predictors of changes in different aspects of functioning of older people. Because chronic diseases are not considered as one of the main outcomes in the model, it was considered adequate to conduct the assessment of the presence of chronic diseases mainly by respondents’ self-reports.

Questions concerning the presence, treatment and severity of selected chronic diseases are included in the main interview (LASA035). The selection of chronic diseases that was explicitly investigated was based on prevalence (the most frequently occurring somatic chronic diseases in the Netherlands; roughly >5.0% in the age group 55+ [Van den Hoogen et al. 1985]) and functional consequences:
1) chronic non-specific lung disease (=CNSLD= obstructive lung disease (OLD)) = asthma or chronic obstructive pulmonary disease (=COPD)), 2) cardiac disease, 3) peripheral arterial disease (PAD), 4) diabetes mellitus (DM), 5) cerebrovascular accident (CVA) or stroke, 6) osteoarthritis, 7) rheumatoid arthritis and 8) cancer. In addition, respondents were asked whether they had any other chronic diseases (defined as a disease of which symptoms and/or treatment had been present for at least three months, see appendix). A maximum of two other chronic diseases could be entered. Apart from this, it was explicitly asked whether the respondent had involuntary urine-loss. Furthermore, from LASAC035 onwards hypertension from the appendix was asked as main chronic disease, and from LASAD035 onwards head trauma was additionally asked.

Presence of chronic diseases
The ‘core’ questions concerning the presence or absence of the eight specific chronic diseases were derived from the chronic disease questionnaire of Statistics Netherlands [CBS 1989]. These questions were also included in the short version of the main interview. At the C-cycle the telephone survey among respondents or proxy’s can be found in file LASAC602, and file LASAC600 or LASAC002 can be used to distinguish between who was interviewed: the respondent or proxy. At the D-cycle the telephone survey was cut into two different telephone surveys: one with the respondent (LASAD702) and one with the proxy (LASAD602). In addition, between the C-cycle and the D-cycle an additional telephone survey among frail respondents was conducted, one with the respondent (LASAC702) and one with the proxy (LASAC712).

In 1992/1993, 2001/2002, 2005/2006 and 2010, information on chronic diseases was obtained from General practitioners. Information on the General practitioner (GP) data collections can be found in the documentation files found under ‘GP information

After comparing with GP information, the self-reports of the chronic diseases asked explicitly were found to be fairly accurate, with the exception of arthritis and PAD. Osteoarthritis and rheumatoid arthritis were combined because it appeared to be difficult for respondents to distinguish these two diseases, especially for those with osteoarthritis. Kappa’s ranged from 0.30 to 0.40 for arthritis and PAD, to 0.85 for DM [Kriegsman et al. 1996]. This was assessed for respondents who completed the full interview at baseline (B-cycle).

In the main interview, when a respondent reported a chronic disease to be present, branching questions concerning the specific disease were asked (‘disease specific questions’). These additional questions concerned medical treatment (use of medication and regular contact with a physician) and disease-specific symptoms and signs. Pertinent medical history questions (questions that physicians use to get an impression of disease-severity) were selected in close cooperation with general practitioners with expert knowledge on the specific chronic diseases. For malignancies, an oncologist was consulted.

Response categories
At the B-cycle the response categories were: Missing, No and Yes. At the C, D, E and F-cycles the No and Yes response categories of the presence of a chronic disease were extended (for example at the D-cycle: ‘No, never’; ‘No, Yes at C’; ‘Yes, No at C’ and ‘Yes, Yes at C’). Until the D-cycle, it was recommended to recode the response categories as: Missing, ‘No, never’ as No, and the other three categories as Yes. It was assumed that once a respondent has a chronic disease, (s)he is affected for the rest of his or her life. From the E-cycle on, the chronic diseases were not all seen as chronic due to the major medical developments of the last few years. For example; patients with plaque in the coronary arteries can be cured by angioplasty (or dottering) and patients with breast cancer can be cured by a mastectomy (removement of the breast).
In the arthritis algorithm it was chosen to categorize the two response categories starting with ‘No,..’ as No, and the two categories starting with ‘Yes,..’ as Yes. In the longitudinal decisions new decisions followed how to recode a No answer following a Yes answer of the previous cycle (see Algorithms OA_docu). So from the E-cycle on, it is best to make decisions per disease and per research question.

Use of information on chronic diseases
General
The information on chronic diseases from respondents not participating in the main interview, but participating in the short interview at baseline (included in LASAB035) or in the telephone surveys at the C-cycle (LASAC602) and/or D-cycle (LASAD602, LASAD702) or in the additional telephone survey among frail respondents (LASAC702, LASAC712) can be combined with the information included in the files of the main interviews.

Summary measure: number of chronic diseases
The number of chronic diseases (data from main interview: LASA235) is primarily used as an independent variable, measuring the presence of (co)morbidity. In constructing this variable, osteoarthritis and rheumatoid arthritis are considered as one disease.

Depending on the specific purpose, two ways of counting the number of chronic diseases can be used:
- *nochrom: the number of chronic diseases that were explicitly asked about (including CNSLD, cardiac disease, PAD, stroke, DM, arthritis and malignancies), ranging from 0-7.
- *nochrot: the number of chronic diseases that were explicitly asked about (including the seven variables above, hypertension and other diseases); ranging from 0-9.

The variables xnochrom and xnochrot are longitudinally cleaned variables. Be aware that LASAD235, LASAE235 and LASAF235 are not longitudinally cleaned. For longitudinal information see ‘longitudinal data on chronic diseases’ in this document.

Use of branching questions
For all specifically asked chronic diseases, continuous medical treatment is considered to be present when the patient reports to use prescribed drugs, and/or to have regular contact with a physician (general practitioner or medical specialist) for the index disease.

Symptoms of CNSLD include the presence of daily coughing, daily phlegm production, periods of increased coughing or phlegm-production during the past year, shortness of breath with light exertion or at rest, and wheezing breath during rest, and the degree of disturbance of night-rest because of CNSLD symptoms. The questions were partly derived from the questionnaire developed by Van der Lende et al. [Lende 1975].

For cardiac diseases, the responses to the disease-specific questions, which were partly adapted from the Rose-questionnaire [Rose 1962], can be used to distinguish separate diagnoses. A history of myocardial infarction (MI) can be considered present when the patient positively responded to the question whether he or she ever had a MI. Angina pectoris (AP) can be considered present when the patient reported to experience pain, or a heavy, uncomfortable feeling on the chest during exertion (walking stairs or walking or cycling against the wind), disappearing within 10 minutes after stopping or taking sublingual nitroglycerine. Also, when the patient avoids exertion because of chest-pain, AP can be considered present. Other coronary artery disease can be defined as a history of coronary artery surgery (Coronary arterial bypass grafting (CABG)), without MI and without symptoms of AP. Congestive heart failure can be considered present when the patient has to sleep with more than one pillow because of shortness of breath and/or reports to have edema of the ankles, feet or legs when waking up in the morning. Diseases of the cardiac valves and serious arrhythmia’s are considered present when the patient reports to have had valvular surgery or a pacemaker implantation, respectively. All patients, who do not fit in at least one of the diagnostic categories described above, can be considered to have 'other cardiac disease'. This category thus includes, for instance, relatively benign arrhythmias or valvular lesions without a history of surgery.
Additionally, in a subsample at LASA-C and LASA-D, the degree of aortic calcification was assessed with lateral radiographs (see documentation on Lateral radiographs: vertebral deformities, disc degeneration, and aortic calcification; LASAC805/LASAD805 by S. Pluijm & N. v. Schoor)

For PAD, the following symptoms are distinguished: intermittent claudication (experience of pain or cramps in the calves when walking which disappears within 10 minutes after standing still), history of arterial surgery (bypass or dotter procedure) of the abdomen or lower limbs, and a history of other arterial surgery.

The symptoms of DM pertain to the presence of diabetic complications: macrovascular complications (AP and/or intermittent claudication), retinopathy, and peripheral neuropathy. Macrovascular complications are defined as the presence of symptoms indicating AP and/or intermittent claudication. These are considered complications only when the patient does not report cardiac disease and PAD, respectively. Retinopathy is considered present if the patient reports a history of laser coagulation therapy. Peripheral neuropathy can be considered present when pain in the legs and/or feet is reported during rest.

In both cardiac diseases and DM, some disease-specific questions are the same and were partly adapted from the Rose-questionnaire [Rose 1962]. If a person reported both DM and cardiac disease, the questions which were the same were asked only once.

For stroke, the presence of specific sequelae is included, namely locomotor disabilities, visual handicap, and expressive (such as difficulties in finding words) or perceptive (understanding written text) aphasia. A history of two or more strokes is included separately.

For arthritis (osteoarthritis and/or rheumatoid arthritis), both the presence of symptoms and the extent of joint involvement, as well as a history of joint surgery are taken into account. The following symptoms are included: pain in one or more joints during most days of the previous three months, morning-stiffness in the joints during most days of the previous three months, and swelling of one or more joints during most days of the previous month. Upper body involvement is present when symptoms are experienced in the hands, wrists, elbows, shoulders or neck. Lower body involvement includes the presence of symptoms in toes, feet, ankles, knees or hips. Because the symptoms and the functional consequences of arthritis, especially when confined to few joints, can be alleviated by joint replacement surgery, the presence of a history of surgery of the joints of the upper, respectively the lower body, is asked separately.
Moreover, in a subsample at LASA-C and LASA-D, spinal disc degeneration was assessed with lateral radiographs by using the four point Kellgren scale (Kellgren et al., 1963) (see documentation on Lateral radiographs: vertebral deformities, disc degeneration, and aortic calcification; LASAC805/LASAD805 by S. Pluijm & N. v. Schoor).

Because the numbers of respondents with a specific primary malignancy are too small to include them separately, malignancies are categorized according to overall 5-years survival rates after diagnosis [Perez & Brady 1992]. If the patient reports to have had two or more primary tumors, the category was based on the tumor with the worst prognosis. Non-melanoma skin cancer can be categorized as having an excellent prognosis. Malignancies of intermediate severity (5-years survival rate >50%) include malignant melanoma, sarcomas, lymphomas, cancer of the breast, genito-urinary tract (except cancer of the ovaries), brain, larynx, colon and rectum. Cancer is considered to be severe (5-years survival rate £50%) in case of leukemia, and cancer of the lungs, esophagus, stomach, pancreas, liver, gall bladder or the ovaries. A history of two or more primary tumors and the presence of hematogenous metastases can be included separately, as well as the various treatment modalities (surgery, chemotherapy and radiation therapy).

These branching questions can be used in different ways, serving different purposes. First, the questions pertaining to continuous medical treatment can be used to define the presence of chronic diseases more strictly. This, however, was shown to have hardly any influence on the accuracy of respondents’ self-reports [Kriegsman et al. 1996]. Second, the branching questions can be used to improve the prediction of outcome measures such as physical functioning [Kriegsman et al. 1997].
Third, the branching questions can be used to define subgroups within a specific chronic disease, for example, according to disease severity [Penninx et al. 1997]. Fourth, the branching questions can be combined with information from other data resources (medical interview: inspection of medicine bottles, and medical records of general practitioners) in LASA. Penninx et al. combined the resources to obtain a diagnosis for cardiac disease [Penninx et al. 2001]. Moreover, algorithms (decision trees) were developed for highly prevalent cardiac diseases: AP, MI, Congestive Heart Failure (CHF) and Cardiac Arrhythmia (AR) and for major vascular diseases: PAD and CVA (or stroke). See documentation on ‘LASA BCD Algorithms for cardiac diseases and cardiovascular diseases LASA’ by Bianca Schalk & Marijke Bremmer (& Marjolein Visser). Finally, algorithms were developed for the prevalence and incidence of osteoarthritis. See documentation on ‘Algorithm for presence of osteoarthritis - LASA BCDEF’ by Lisanne Verweij & Marjolein Visser.

Longitudinal data on chronic diseases
Based on additional information from the respondent in consecutive measurement cycles, the information from previous cycles may have been adapted during longitudinal cleaning. For example: when the respondent indicated chest complaints who were investigated by a cardiologist, but no cardiac disease has been diagnosed and the respondent had thus for the B-cycle on bhart01= Yes. And during the C-cycle the respondent indicates that three years ago his chest complaints were caused by heartburn, the bhart01 on the B-cycle will be changed into a No. The longitudinally cleaned data on chronic diseases for the B and C measurement cycles are available in the files LASAB435 and LASAC435. All longitudinally cleaned variables start with a x (for example xcara01, xnochrot). Be aware that data of the D, E and F cycles are not cleaned longitudinally. For cross-sectional analyses the files LASAB-C-D-E-F035 should be used.
It is obvious that the use of the longitudinally cleaned files and the LASAB-C-D-E-F035 files has advantage and disadvantages. For example, the use of longitudinally cleaned files for persons who died at the d-cycle (cleaned with data of the B-cycle and C-cycle) is not the same as for persons who remained alive (cleaned with data of the B-, C- and D-cycle).

Keep in mind that the data are based on self-report, and assessed as predictor, not as outcome. However, the incidence of a chronic disease can be determined, when combined with other data resources (medical interview: inspection of medicine bottles, and medical records of general practitioners), by assessing whether respondents not reporting the disease at a particular measurement cycle, report this disease at the consecutive cycle. Although the data have been extensively cleaned longitudinally, this should be checked in the data files. In assessing the incidence of a chronic disease, longitudinal decisions should be made per disease and per research question.

Questionnaires
LASAB035 / LASAC035 / LASAD035 / LASAE035 / LAS2B035 / LASAF035 / LASAG035 / LASAH035 / LAS3B035 / LASMB035 / LASAI035 (main interview, in Dutch, in preparation);
LASAC602 / LASAD602 / LASAE602 / LASAF602 / LASAG602 / LASAH602, LASAI602 (telephone interview with PROXY, in Dutch);
LASAD702 / LASAE702 / LASAF702 / LASAG702 / LASAH702, LASAI702 (telephone interview with RESP, in Dutch)

in C also with respondent

Variable information
LASAB035 / LASAC035 / LASAD035 / LASAE035 / LAS2B035 / LASAF035 / LASAG035 / LASAH035 / LAS3B035 / LASMB035 / LASAI035;
LASAB235 / LASAC235 / LASAD235 / LASAE235 / LAS2B235 / LASAF235 / LASAG235 / LASAH235 / LAS3B235 / LASMB235 / LASAI235 (nr. of diseases);
LASAB435 / LASAC435 (longitudinally cleaned)
(pdf, in preparation);

LASAC602 / LASAD602 / LASAE602 / LASAF602 / LASAG602 / LASAH602, LASAI602
(pdf);
LASAD702 / LASAE702 / LASAF702 / LASAG702 / LASAH702, LASAI702
(pdf)

Availability of information per wave1:

 

B

C

D

E

 
2B*

F

G

H



3B*

MB*

I*

Chronic
diseases

 Ma

Ma 

Ma

Tel-resp
Tel-prox

Ma

Tel-resp
Tel-prox

Ma

Ma

Tel-resp
Tel-prox

Ma

Tel-resp
Tel-prox

Ma

Tel-resp
Tel-prox

Ma

Ma

Ma

Tel-resp
Tel-prox

1 More information is available on:   
http://www.lasa-vu.nl/data/lasa/sampleLASAdatacollection.html

* 2B=baseline second cohort;
   3B=baseline third cohort;
   MB=migrants: baseline first cohort (Under Construction);
   I=Under Construction

Ma=data collected in main interview;
Tel_resp=data collected in telephone interview with respondent;
Tel_prox=data collected in telephone interview with proxy

Previous use
As outcome measure: cardiac diseases [Penninx et al. 2001], use of the algorithms on cardiovascular diseases [Schalk et al. 2006; Bremmer et al. 2006].
Several papers have used each chronic disease or number of chronic diseases as a determinant, predictor or covariate.

References

  1. Central Bureau of Statistics (CBS) (1989). Health Interview Questionnaire. Heerlen, the Netherlands: Central Bureau of Statistics.
  2. Hoogen HJM van den, Hyugen FJA, Schellekens JWG, Straat JM, Velden HGM van de (1985). Morbidity figures from general practice, data from four general practices 1978-1982.
  3. 3. Kriegsman DMW, Penninx BWJH, Eijk JThM van, Boeke AJP, Deeg DJH (1996). Self-reports and general practitioner information on the presence of chronic diseases in community dwelling elderly. A study on the accuracy of patients' self-reports and on determinants of inaccuracy. J Clin Epidemiol, 49:1407-17.
  4. Kriegsman DMW, Deeg DJH, Eijk JThM van, Penninx BWJH, Boeke AJP (1997). Do disease specific characteristics add to the explanation of mobility limitations in patients with different chronic diseases? A study in The Netherlands. J Epidemiol Community Health, 51:676-85.
  5. Lende R van der, Jansen-Koster EJ, Knijpstra S, Meinesz AF, Wever AMJ, Orie NGM (1975). Definitie van CARA in epidemiologie en preventie. [Definition of CNSLD in epidemiology and prevention]. Ned Tijdschr Geneeskd, 119:1975-1987.
  6. Kellgren JH, Jeffrey MR, Ball J. The Epidemiology of Chronic Rheumatism: Atlas of Standard Radiographs. 2nd Edition. Blackwell Scientific, Oxford, 1963.
  7. Penninx BWJH, Tilburg TG van, Deeg DJH, Kriegsman DMW, Boeke AJP, Eijk JThM van (1997). Direct and buffer effects of social support and personal coping resources in individuals with arthritis. Soc Sci Med, 44:393-402.
  8. Penninx BWJH, Beekman ATF, Honig A, Deeg DJH, Schoevers RA, Eijk JThM van, Tilburg W van (2001). Depression and cardiac mortality: results from a community-based longitudinal study. Arch Gen Psychiatry, 58:221-7.
  9. Perez CA, Brady LW (eds) (1992). Principles and practice of radiation oncology. Philadelphia: Lippincott.
  10. Rose GA (1962). The diagnosis of ischaemic heart pain and intermittant claudication in field surveys. Bull World Health Org, 27:645-658.
  11. Schalk BW, Visser M, Bremmer MA, Penninx BW, Bouter LM, Deeg DJ (2006). Change of serum albumin and risk of cardiovascular disease and all-cause mortality: Longitudinal Aging Study Amsterdam. Am J Epidemiol. 164(10):969-77.
  12. Bremmer MA, Hoogendijk WJ, Deeg DJ, Schoevers RA, Schalk BW, Beekman AT (2006). Depression in older age is a risk factor for first ischemic cardiac events. Am J Geriatr Psychiatry. 14(6): 523-30.

Appendix
Other disease list, from the LASA b-, c- and d- cycle oral main interview made by D. Kriegsman.
From the e-cycle on, other diseases that were mentioned were not categorized. This was done for the following reasons: 1) researchers mainly (only) use the main chronic diseases, 2) the respondent can only mention two other chronic diseases. Thus, the list is incomplete and several diseases are underreported, 3) The categories are crude and therefore information on specific diseases is lost.

Other diseases:
1 'Hypertension'
2 'Ulcer stomach or duodenum'
3 'Serious intestinal disease'
4 'Gall-stones/gall-bladder disease'
5 'Liver disease or cirrhosis'
6 'Inguinal hernia'
7 'Kidney stone'
8 'Kidney disease-serious'
9 'Chronic cystitis'
10 'Prostate complaints (males)'
11 'Prolapse (females)'
12 'Thyroid disease'
13 'Backproblems, hernia'
14 'Epilepsy'
15 'Dizziness with falling'
16 'Migraine'
17 'Serious skin disease'
18 'Decubitus-ulcer'
19 'Allergy/hay-fever'
20 'Serious consequences accident'
21 'Other serious consequences/burns'
22 'Consequences surgery/operations'
23 'Disease of nervous system'
24 'Mental problems, incl. depression'
25 'Eye diseases'
26 'Ear diseases/hearing problems'
27 'Venous insufficiency/varicose veins'
28 'Anaemia'
29 'Chronic headaches (no migraine)'
30 'Chronic neck-problems'
31 'Dizziness without falling'
32 'Congenital disorders'
33 'Hypercholesterolaemia'
34 'Gout'
35 'Menopausal complaints (females'
36 'Osteoporosis'
37 'Other pulmonary disease (no CNSLD)'
38 'Systemic diseases'
39 'Other hormonal diseases (no diabetes/thyroid)'
40 'Other urological disease (no incontinence)'
41 'Other locomotor disease'
42 'Other vascular disease'
43 'Other neurological disease'
44 'TIA'
45 'Other hematological disease'
46 'Pancreatitis-chronic'
47 'NO LABEL = empty'
48 'Addiction'
49 ‘Other chronic disease’
50 ‘Other non-chronic disease’